Not sure where to begin. My name is Melvin Mahan, I am, just turned 45, and 8 months ago I was diagnosed with metastatic stage iv prostate cancer that has spread to my ribs and pelvic lymph nodes. I started hormone therapy with aan injection of firmagon. My PSA level dropped from 51 to 7.4 in that month. I then received my first injection of a four month injection of Lupron and started receiving monthly injections of Xgeva. Three months into the meds I received additional scans showing my tumors shrunk and we're no longer detectable. One month later my PSA started to rise and was rapidly rising. I was excepted to start a phase iii clinical trial using xtandi and zytiga together; however, the doctor said my cancer was so aggressive that one I couldn't wait six weeks to start the trial and two he was worried that if I used two on the market drugs that if I were to fail treatment it wouldn't benefit me because I world lose out on one option. One month into taking zytiga alone my PS levels dropped from 12 to 7. At this time was taking ritalin in place of prednison. The doctor wanted me to try prednisone because I was having much fatique and bone pain. Two days into prednisone, my vision went blurry and the doctor sent me fur additional PSA Test and my levels dropped in One week to 6. Stopped the prednisone and back on ritalin. One week later PSA levels rised to 8. I will stay on zytiga for another month to see if I failed this round of hormone therapy. I had severe hit flashes from the initial lupron and have been taking megace which does help tremendously. I have severe sleeping issues and have tried every medicine possible to sleep. Trazadone send to work best but I still have nights where I wake every hour. Today I am going fit MRI and cat scan. Friday, I will here the results. I try to the best of my ability to stay positive.
just a quick update: I found my pathology report states (T4, Pn1, M1). I am currenlty taking Zytiga and Xgeva. I believe the Xgeva is what is making me so sore.??? My last MRI/CTscan showed no cancer in my spine; however, I have a herniated disc. They asked me to do physical therapy which I have failed to do so. (knowing it is 3 days a week sounds exhausting). I don't have much energy!! I am hoping when the weather breaks my body and mind will feel rested. I am currently taking Ritalin, Megace, Trazadone, Naproxin, Oxycodone, Zytiga, and Xgeva.
PSA Levels: June/2013 = 51, (FIRMAGON, LUPRON) July/2013 = 7.4, Oct 2013 = 9.1, Nov 2013 = 9.8, Dec 2013 = 12. PSA LEVELS: (ZYTIGA) Dec 2013 = 7.93, Feb 2014 = 8.09, March 2014 = 6.77.
My levels on zytiga are not going up, nor coming down. I didn't receive my bone shot this month. Currently on xgeva monthly. Doctor mentioned switching to zometa but will discuss later. Since my levels hasn't reached non detectable in the past six months my doctor is sending me to johns hopkins to discuss whether they feel I am doing the correct treatment and/or to discuss clinical trial with them. I just keep thinking positive everyday!! :-) I am going for additional bone scan and cat scan in May. More info to follow. EVERYBODY....STAY STRONG
My levels on zytiga are not going up, nor coming down. I didn't receive my bone shot this month. Currently on xgeva monthly. Doctor mentioned switching to zometa but will discuss later. Since my levels hasn't reached non detectable in the past six months my doctor is sending me to johns hopkins to discuss whether they feel I am doing the correct treatment and/or to discuss clinical trial with them. I just keep thinking positive everyday!! :-) I am going for additional bone scan and cat scan in May. More info to follow. EVERYBODY....STAY STRONG
Well, yesterday (June 18, 2014) marked the one year "unwanted anniversary" of Melvin's diagnosis. As stated, his PC was advanced when discovered. The Lupron was not effective and showed no benefit - he immediately started Zytiga. The Zytiga has been keeping his levels down but not down enough to be non detectable. His levels have been at 6 for the past 3 months and he is due for another PSA test now. For the most part, Melvin is doing great. He looks great! His energy levels are down but that is due to his testosterone being < 10. We are going to GMBC on 1 July 2014 to learn about Radium 223 used in combination with his Zytiga. (he hasn't had an xgeva injection for 2 months). Our doctor is FABULOUS. He explained that the radium 223 is 6 injections in a 4 week time frame that will go straight to the tumors (which are still non detectable thru cat scans) and ZAP them. We are always looking for a better quality of life. Melvin is a fighter with many supporters.
Update: Was doing very well on Zytiga. PSA levels fluctuated between 4 and 6 for the past 8 months or longer. On my 10/31/2014 appointment I was given the option (my discretion) to stop the Zytiga/Prednisone for three months to start Provenge. I decided to do so. On Nov 5, 2014 the Zytiga was stopped. Weened off prednisone and took last pill on 11/14. Doctor said would monitor blood work closely every two weeks for the next three months, prior to starting Provenge. My last PSA and Testosterone levels taken on 10/22 were: PSA = 4.72, T = less than 10. Received blood work on 11/21/2014 with the following results: PSA = 12.08, T = 349. Wow, in only two weeks levels skyrocketed. I didn't really feel much different, maybe a little pressure in my pelvic area. Stress, anxiety, fatigue - always a factor. I'm thinking I may have made the wrong decision stopping the Zytiga. My friend is suffering from Multiple Myeloma and with him not being strong enough to undergo a stem cell or bone marrow transplant I was thinking I should do this while I am strong enough.... ??? Just talked to my doctor and I am going in to see him today. Most likely will get an injection of Lupron, starting all over to lower this T level. It will knock me on my butt for a couple/few days. Will update later. Happy Turkey day to all.
Well, I have been feeling pretty good. I stopped the Zytiga in November. Doctor checking PSA and Testosterone every two weeks. After two weeks my levels skyrocketed. My PSA was 12.08, my T was 349. I had energy!! No energy and fatigue feeling is definitely due to having no T. I was injected with Lupron just as I thought I'd be. (i previously failed Lupron after only one 4 month injection with rising PSA levels). AFter two weeks of Lupron injection, my PSA rose higher to 16.35 and my T levels went down to only 172. I am still feeling good with a little more energy. I went back on Zytiga on Dec. 13th and due for more blood work on Christmas day.. I'll be doing blood work on 12/26. Cat scan and Bone scan completed today. Will update results from that at a later date. According to my doctor, there is currently a clinical trial going on that combines Provenge with Zytiga (regardless of the steroid). I think I'll go that route next, outside of a clinical trial.
Merry Christmas to all my YANA friends. Stay Strong..
It's been quite a long time since I've updated this journal. Today, March 12, 2015... Melvin is going strong considering. He lost a best friend to multiple myeloma and carries much pain with him. We have had so much support from family and friends, emotionally and financially. We could never thank everyone enough. To update and share his fight with cancer. ... He has been on a hormonal treatment since Dec 2013 which has considerably shrunk tumors in his bones making them non detectable thru bone scans. It is obvious his cancer is very aggressive however because he chose to stop treatment and after two weeks of stopping his cancer levels tripled. He immediately went back on tbem. He is back on track and on April 14th he starts, in combonation with his current meds, a stem cell type procedure that will temporarily destroy cancer cells and boost his immune system. This immunotherapy adds quantity and quality to his life! The procedure itself may be a tad bit rough on him but all I really can say is Melvin is the perfect example of what it means to fight the good fight... this new treatment sounds promising. I hope to keep all informed of his journey with the transfusions... HUGS
Received PROVENGE in May 2015. Still receiving cat scans every 3 months, PSA levels monthly. Since PROVENGE (in combination with Zytiga) - my levels were 0.86 in June, 0.76 in July, and 0.36 in August 2015. LOVE the 0. numbers!!! Feeling very tired but keep going.
Not sure what ADT2 and ADT3 are?? I chose ADT3 becuase I have rec'd lupron (failed after 4 months with rapidly rising PSA numbers) Zytiga and Provenge. Still taking Zytiga/Prednisone and have been for 21 months. Also get xgeva injections.
STAY STRONG, this is September - Prostate Cancer Awareness Month. Spread the word <3
The PSA velocity shows PSA doubling every 2 months. My PSA and Testosterone is monitored every month. CAT and PET scans every 3 months which show no progression in tumors (still non detectable). Currently on Zytiga (28th month) - received Provenge in May 2015 in combo with the Zytiga. Lupron periodically (which I HATE the side effects) - I try to stay clear of lupron. Figure with a testosterone level under 10 there is no need for the added meds in my body. My body; my choice. Waiting 2 months and if PSA continues to rise I will start chemo and/or possibly start a clinical trial. Other than not sleeping well I feel pretty good; sore but no pain. Take day by day and live life to the fullest with my children. I was originally told chemo was "last resort" however, after 2014/2015 additional statistics revealed chemo as early treatment showed positive outcomes. PC sucks; sucks the life right out of you.
Received an email to update my story. I guess it has been a long time. I talk and am in support groups through Facebook. Not much to update. I have been on Zytiga for 41 months this month. As shown above, I did do Provenge in combination with Zytiga. After Provenge, my PSA levels went lower than I have seen since my journey began. They remain low (0.68); however, each month go up by about .05. Doctor said once I hit the 1. number he wants me to try chemo. I am very uncertain about this. In the beginning I said I would never do chemo (and this time was told it was my last resort) - new statistics show chemo before androgen has better outcomes.???? Who is to say.... I have learned to live with all of my symptoms which include sweats, can't sleep, swollen stomach, soreness, mind and anxiety issues. The list goes on. I will never be the same man and blame it solely on the meds. Periodically I get Lupron shots but on my terms. I cannot stand the side effects from this med and as long as my testosterone remains below 20 I feel what is the sense in having more drugs and more side effects. STAY STRONG!!
Just a quick update.. I am still taking zytiga. Zytiga, prednisone, and lupron injections. I was originally told I would fail zytiga, normally within 18 months; I just started month 55. As my story previously stated, in/around 2015 I did Provenge in combination with zytiga. Normally doctors do not want you taking steroids during the Provenge procedure; however, it worked great wonders for me and I am still going strong. My PSA fluctuates often.... UP/DOWN/UP/DOWN. I get blood work every 28 days along with a one month injection of Lupron. I periodically take breaks from Lupron. The three/four/and six month injection of Lupron is much harder on me than the one month injection. As far as the zytiga... i take 4 pills every morning i wake and as soon as i eat I take the prednisone. Doctors originally gave me 3-5 years survival rate and June 18, 2018 was my 5 year mark. I feel confident I have many more years to go. I have learned to live my new normal life with exhaustion, pain, and anxiety. Till next time.......
Still going strong. Zytiga, prednisone, lupron for 68 months. Have exceeded cancer centers expectation.
7 years/4 month fight. As stated before, I was diagnosed in June 2013, December 2013 become resistant to hormone treatment. Started zytiga with 5mg of prednisone. May 2014 did provenge in combo with zytiga. Still today taking zytiga, prednisone, and lupron injection every 28 days. My PSA has been rising last 6 mo. Getting scans on 10 Oct but was told most likely will not see progression in tumors until PSA reaches 10 or higher??? When diagnosed I had visible tumors in ribs, pelvis, and lymph nodes. I'm tired... Lost all muscle and am only 51. My appearance is great apparently because nobody except myself and immediately family realize how sick I really am. But, I'm alive and still working daily. Doctor didn't want to change meds yet but when we do decide to change I'll be trying Xtandi with chemo being said my last option. Always look forward to clinical trials too. Best wishes to you all.
Coming up on 10 years of fighting and still going strong. Over exceeded all doctors expectations with zytiga and prednisone. December was 9 years on the combined drugs, along with lupron which I'm currently on a break from. My testosterone levels are currently 53 so my thoughts are I will have to go back on lupron. In 2021 I had radiation to the pelvic area. In 2022, the cancer spread to shoulders and I received radiation again. My overall is good but I'm very weak, tired, and my hips are killing me but I'm strong and keep on keeping on. Love to all.
Effective June 18, 2024 I'm officially an 11 year survivor! Scans in 2021 and 2022 revealed spread. 2021 spread to pelvis and 2022 spread to shoulders of which I did back to back radiation. I'm very sore all over. An ache feeling everywhere but still working everyday. In Jan 2024, because of my aches and pain, I decided with doctor permission to take a break from all meds. My meds have been zytiga, prednisone, lupron for past 10.5 years as you can read about above. April 23, I'll be getting blood work to see how my cancer is relating to be on a med vacation. Love to all fighters, we've got this!
Effective June 18, 2024 I'm officially an 11 year survivor! Scans in 2021 and 2022 revealed spread. 2021 spread to pelvis and 2022 spread to shoulders of which I did back to back radiation. I'm very sore all over. An ache feeling everywhere but still working everyday. In Jan 2024, because of my aches and pain, I decided with doctor permission to take a break from all meds. My meds have been zytiga, prednisone, lupron for past 10.5 years as you can read about above. April 23, I'll be getting blood work to see how my cancer is relating to be on a med vacation. Love to all fighters, we've got this!
Melvin's e-mail address is: kathymahan1 AT gmail.com (replace "AT" with "@")