Help.

My Husband had an Axium pet scan that showed 2 lymph nodes in the pelvis. He already had prostatectomy in 2011 and Radiation in 2014. He begun taking zytga 1000mg a day plus the firmagon shot every 28 days. Has anybody been on this treatment and for how long? Do you stop soon after psa drops?

We visited the radio oncologist last Friday and told us that he would have been surprised if the medical oncologist gave him firmagon instead of lupron. I heard lupron causes a flare, is this the reason the med oncologist wants to keep him on fermagon? This medical oncologist is very knowledgeable, however he seem bothered with questions. I want to get inform to get the best treatment for my husband. Any comment will help. My prayers for all of you. Thank you in advance.

35 Replies

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  • Welcome to the group,I am no Doctor, just repeating what I had heard, I think the object is to get to an undetectable psa , and hold it for at least a year ,showing clear scans, before going intermittent . I never did intermittent in 11 years . According to this study that I found firmagon/degerilix(other name) is superior to Lupron,in that it lowers T faster ,and that it does not produce psa flare as you said. onlinelibrary.wiley.com/doi.... It would be nice if the MO was more patient. In this time learn all you can, What is his current psa, and what was his Gleason score. Others will reply with very informed comments, this is a great group, we are here for you.

    Dan

  • Thank you Dan,

    Great information. My husband talked to MO today and told him exactly what you are saying. He actually said his goal is to cure it with Zytga and Firmagon. The Radio Oncologist definitely had a different opinion. He said the first dose of firmagon followed by lupron will do it. The best of luck to you.

  • In the month before my surgery, I received a shot of firmagon and then after that I was on Lupron. So I think that's pretty common. I think for most patients, the firmagon shots into the abdomen are not as easy to tolerate as the lupron shots into your butt. So once your T has decreased with the firmagon, most people prefer the lupron. My urologist gave me a choice though and I chose the lupron.

  • Hi Cfree 1,

    I see him having hard time with the shots in the abdomen he gets swollen and very sore. It's good to know that he has options. Thank you for the info. Its highly appreciated.

  • Yeah, that was the same for me. It looked like I had an allergic reaction and now, two year later, i still feel where I took those shots in my stomach. I've been on Lupron for almost 2 years now and just added Casodex orally. So there are a few different methods to attack the cancer from a hormone standpoint. After this, there is Zytiga and/or Xtandi yet.

  • Recent trial have shown a strong synergistic effect taking Zytiga with Lupron (firmagon was not part of the trials). However, Firmagon and Lupron work in a similar manner. That fact, along with the lack of a T flair with Firmagon may be why the doctor picked it. After a year on Lupron (which was presided by surgery and radiation) they added Zytiga to the mix. So far I have had no additional side effects from the Zytiga.

    Could you please share additional information about your husband’s cancer? The more information you can provide the more likely the group can come up with suggestions.

    Please know we are all here for the two of you. You two are not alone!

    Walt (not a MD)

  • Thank you Dr_who,

    I can never get enough info from all of you that been going through the same thing.

    My husband was diagnose Oct 2010 with gleson score 3+4. Prostatectomy Feb 2011. He had an undetectable psa for almost 3 years until it rose to 0.5. 37 sessions of salvage radiation and he continues to have a slow psa. After pet scans, bone scans, cat scans, they showed no mets. It was finally the axium pet scan that showed the 2 lymph nodes measured 0.7 x 0.6 and 0.6 x 0.4. July psa 8.7. He had a blood test done 5 days after the first dose of firmagon and his psa went down to 7.3 so that is good news. Today he had the second shot and I'm hoping he has an even lower psa next time. Thank you so much Dr_ who for taking the time to respond. My thoughts are with you.

  • Hi Chiquita, it certainly seems as though your husband is essentially receiving good treatment but keep pressing the Oncologist and do keep asking on here for any help or advice. I am in my 4th year of asking and being helped by our brothers and sisters, women are usually the ones with both the greater burden of care and are more insightful. What was your husband's primary PSA? Did he have a routine blood check or were there symptoms that made him go to the doc? For example I was Dxd with Incurable metastic prostate cancer after a week of odd symptoms. Tests showed I was pretty bad and they explained many have no symptoms and that my cancer was at least 3/4 years advanced. I was able to pinpoint with my wife exactly when this may have commenced. 1 week in Greece when I felt vaguely unwell - I am never unwell (even now with PCa) especially as I was in Greece where I lived for 5 years. The Oncos took that into account when planning my next 3 years and here I am still @ 0.030 PSA over 14 months on Zytiga. My Oncologist team in London is great but I can press them for more info because of what I learn here. Good luck and God Bless

    David

  • Hi David,

    I have learned so much from this community. We found out about his cancer from a routine visit to the doctor. She asked if he had ever had a psa test. He was 51 at the time. Unfortunately we had never heard of such a test. His psa was 6.4 followed by a biopsy to confirm PC. The only symptom he had was a bit of tiredness (he still has it) even with PSA at 8.7 in July.

    Now that he's in treatment, he has hot flushes and soreness in the abdomen from shot, but he can tolerate it. Happy to see your low psa and that you are doing well. May this continue for many, many years. Thank you.

  • Thank you for the information. While I am very sorry that they found the mets, the fact that it was only picked up using the Axium scan means that you picked it up before the bone scan could see it. From what I have read the treatment plan is a sound one. Let’s all hope the the next PSA is even lower.

    Please also remember to take care of yourself. There is no question about it. It is harder on the caregivers than the ones with cancer. Know that we are all here for the both of you.

    Walt (not a MD)

  • Dr_who

    Yes, I think that in a way it is good that no other test was able to detect the met. Not even the F 18 pet scan could detect it. His Radio Oncologist said If we are going to find something will be with this scan. But, nothing showed. You are right sometimes I forget about me. Thank you for your kind words.

  • Good Morning Chiquis,

    I am 5+ years out from an original diagnosis of PSA=29 with Gleason=10 and mets in many lymph nodes (so no surgery and no original radiation). My Med Onc hit it hard from start with drugs, Lupron, Casodex, and Avodart and added Zytiga with Prednisone in 1/13 as soon as it was approved prechemo. I have alternated between 12 week Lupron and 28 day Firmagon over the years. Zytiga worked for me for about 1 1/2 years. Prednisone does a job on you and I got the "moon face" but it goes away when you stop.

    You husband sounds like he has a good Med Onc since Axumin is now the "gold standard" for FDA approved scans (I had one in September which was most enlightening).

    His current combo should control the lymph nodes, but you might ask about adding Avodart, which has now gone generic. I could only tolerate Firmagon for about 12 months at a time, because of the flu like side effects for the first few days and because of the every 28 days scheduling issue. I had 3 rounds of Firmagon.

    Best wishes. Never Give In.

  • Hi Vandy69,

    Thank you for sharing. Like you said I pray this treatment can control the cancer from growing.

    The best of health to you.

  • Thos seems to be a more agressive treatment early on which informed med. Oncs are using these days because of recent studies. Hope it works for you. Rocco

  • I had recurrence in two pelvic lymph nodes as well found using MRI back in 2015. I had all pelvic nodes radiated by Dr Dattoli in Sarasota and concurrently went on ADT3 ( lupron, bicalutamide and Avodart). No recurrence there since. I suggest you call him as he only treats PCa. You’d need to stay in Sarasota during treatment unless you live close by.

    Bob

  • By the way, I had IMRT to Prostate bed in 2014 after failed RP in 2013. There’s no reason you can’t have IMRT to pelvic lymph nodes after SRT to Prostate bed but you need a very experienced RO which is why I chose Dattoli.

  • I have also been treated at Dattoli for two lymph nodes. That was August 2011. My PSA flared after the treatment flared and then started to drop. It continues to drop and is presently at 0.073. I am also on Casadex and Avodart. Additional radiation is definitely an option for you provided the treatment area does not overlap a previously radiated area. Most likely, it will not. It is important to evaluate your immune system before getting additional radiation.

    The treatment takes about 8 weeks in Sarasota FL. You may have it done elsewhere provided you find an experienced doctor. I would be hesitant to use someone who hasn't done a large number of lymph node radiation treatments.

  • I can't thank you enough for this great information.

    I was under the impression that you couldn't have radiation anymore. Thank you for the information.

  • Call Dr Dattoli . He will schedule a one hour phone consultation. There’s no better RO.

  • I will definitely talk to my husband about it.

  • Chiquis,

    I hate to be the bearer of news you do not want to hear, but I do believe that we all are entitled to know the truth. Your description of your husband's cancer really tells me that the goal of curing it is not really in the picture. What his treatment goal should be, like almost everyone else with advanced prostate cancer is to put it into long-term remission. This is a realistic and obtainable goal.

    You did not mention it, but I am assuming that he is castrated resistant since he is on Zytiga (also I hope that he is taking prednisone). Zytiga should be continued until it is no longer effective. It is not meant to be a treatment that is stopped when his PSA declines.

    Ask the doctors about his having Provenge. Provenge is best taken when there is minimal disease present, NOW is the time. Do not wait for this treatment or skip it.

    In response to your Lupron and Firmagon questions, Firmagon is a superior drug. However, often insurance companies do start to balk at its long-term use because it is very expensive compared to Lupron. Please remember that if he is changed over Lupron he should take an anti-androgen like Casodex or Xtandi (Zytiga is not an anti-androgen) at least ten days prior to the Lupron conversion, even if he was on Firmagon. There is research (see the CancerABCs localized prostate cancer blog post at

    cancerabcs.org/localized-pr...

    that shows that this change in treatment drugs can, like the initial dosing of Lupron cause a flare.

    Joel

    CancerABCs.org

  • JoelT

    Radiating tumors as they are found Is not about curing it. It’s about killing it when it appears rather than just using HT which only lasts so long . Obviously if Mets are found in numerous locations it’s a different story. I believe that killing PCa in each location where it occurs when it is not found in multiple locations helps reserve HT longer . It’s using laser guided bombs and carpet bombing. I’ve been “fortunate “ in that my mets have been few (one or two) and in single locations not previously radiated.

    Bob

  • I am in 100% agreement.

    Joel

    CancerABCs.org

  • Dear Joel,

    As happy as I was to hear the word cure, I knew in the back of my mind that these were ambitious words from the MO. As long as the treatment keeps his cancer from growing I will be more than grateful.

    He had a Prostatectomy and Radiation but his PSA continued to rise so if this has been castrate resistance then yes, he is. He's taken prednisone as well (I forgot to mention)

    I will definitely talk to the MO about Provenge. I'm still learning the different options available.

    Thank you for the info and the link. You have been very helpful.

  • I am sorry for the not as feel good news, but I’m my experience when people think they are cured they get careless and do not properly monitor them self after they think them self cured. Then if they do have a recurrence it is missed and the cancer has a great opportunity to hrow and grow.

    Joel

  • That has been my experience with friends I have lost as well

  • Joel, Don't be sorry. I agree with you. 👍

  • Diagnosed 2000. Surgery, many years on Lupron, recurrence, IMRT, Zytiga, SBRT ( focused beam to irradiate a large involved pelvic lymph node), Provenge, another round of SBRT and Xtandi. Have been off Lupron for over three years, PSA <.01 while only taking Xtandi. Everybody is different. My T level has risen to about 225.

  • Hi David20451,

    17 years fighting PC.

    Congratulations with >0.1 PSA. Very encouraging to read your journey. I pray my husband's PSA will drop soon.

    Thanks a lot!

  • A comment about radiation- I had salvage radiation a couple years after my prostatectomy, however, it was only to the prostatic bed. I learned later, the lymph nodes were not included. After the salvage radiation, my PSA began to rise again. I followed up by going to the Netherlands and having the Combidex scan to determine if I had disease to my lymph nodes, which I did. I took the scan disk back to the radiation oncologist and he overlayed my prior treatment with where the lymph node disease was located using the Combidex results and determined he could radiate again only the areas where the lymph nodes were located without overlapping my prior treatment. I don't know if they're still doing the Combidex scan, but it might be worth checking out. I'd start with determining whether or not the lymph nodes were included in your initial radiation.

  • Hi BrianF505,

    Your case sounds very similar to my husband's. He only had radiation in the prostate bed. Lymph nodes not included.

    Thank you so much for sharing.

  • Hello Chiquis - you husbands situation was very similar to mine. My medical oncologist was Dr. Snuffy Myers who just retired. I was on zytiga and firmagon for about 6 months. My first month of being on this treatment my PSA dropped to undetectable. However I believe the goal was take this drug intermittently. I didn't come off this drug just because my psa was undetectable. After the 6 months if I remember I stayed off these Med's for I believe 6-9 months. When my psa started to rise again Dr. Myers put me on xtandi which I've been on for about a year now. My psa is undetectable (<.015). I actually prefer xtandi over zytiga/firmagon. For me less side effects like weight gain, hot flashes. So my opinion.... medical oncologist mostly don't think out of the box. Mostly want to put all men in the same box and follow protocol (the standard). That's why your one doctor said he would of done lupron.....because that's the protocol. I had an oncologist at Seattle cancer care tell me one time I have to follow our protocol. I'm almost 10 year survivor since my diagnosis I feel if I followed the standard I would have passed by now. I'm 52 now and I feel great, great shape workout, hike, ski and play with my very active 7 year old son like soccer, etc.

    Lymph nodes.... again same situation as your husband. I initially had proton radiation at Loma Linda. My PSA nadir dipped to 3.2 then it started to rise again. I chose to have a selvage radical Prostatectomy at NIH (national institute of health) performed by Dr. Pinto and his team. When they performed the surgery they also removed lymohnodes as a precaution in my pelvic region. I think about 30 which about 4 came back positive from pathology. My psa dropped dropped to .08 for awhile. I wasn't on any hormone treatment then about a year my psa started to rise. I had every scan that I know of. I even went to Mayo Clinic in Rochester where Dr Kwan team did the pet choline C-11 scan. Every came back undetectable. However with a rising psa Dr Myers felt my Pca was still localized and was certain what was left was so small it wasn't showing on these scans. He believed its was in the iliac arteries. When I asked why he said that's where prostate cancer likes to hide out. So he recommended more lymph node removals. This time I had the surgery at UW by Dr. Lam. He removed about 20 more lymohnodes including ones he could find in my iliac area. Well Dr Myers was correct. So with this all being said your husband could just have lymohnodes imvolvement in the pelvic region and not any distant places. I still have some cancer (micro metastatic) but I've been able to manage it by having a great oncologist. I hope this message give you and your husband some hope.

  • Hi DonM253,

    I have learn so much from this community. My husband is now 58. God willing he's looking forward to his retirement. He runs 3 miles 4 times a week ( no exercise for today he's sore from the shot )

    The 2 lymph nodes are in the right iliac pelvis area.

    It's so great to hear you are doing good. What a joy your little one may bring to your life. I feel so much hope, thank you very much for taking the time to write.

  • Firmagon does not produce a PSA flare. Monthly shots will produce a local reaction of red hot swollen and refer area for 1 to 2 weeks.

    He can switch over to Lupton any time after the first dose of Firm agon without a flare (testosterone production has already been halted).

    Lupton side effect of hot flashes can be significantly diminished with Effexor XR, 75 MD a day or more if needed.

    Lupton shots in the but cause soreness for a few days. Maybe some added fatigue then too.

    You can get a 1, 3, 4, or 6 month shot of Lupron. It just depends on how frequently you want to be reminded of your condition and seeing your MO.

    Hope this helps.

  • Hi Chazem,

    Thanks for the information.

    His radio oncologist said that after the first firmagon dose he could switch to Lupron, but the medical oncologist wants to keep him on Firmagon plus zytiga with prednisone.

    The radio oncologist thinks giving those two are a bit aggressive based on the fact that my husband doesn't have any mets to the bone, no pain, no symptoms with a psa of 8.7

    He does have 2 lymph nodes in pelvis area.

    I'm confused of what's the best decision for my husband to make.

    I'm afraid the MO is throwing everything at once and not leaving any options for later on. I may very wrong thinking like this.

    Thank you so much for your respond.

    God bless.

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