Advanced PC to distant lymph odes only-Anyone else have same??

Hi, I have been searching online as well as in this group for other individuals that have PCa metastasis only to lymph nodes. Distant lymph such as cervical nodes. I have only found rare cases that have been documented. My fathers metastasis is along the lymph chain from the pelvic area to his neck area. anyone else have this diagnosis? I just wish I knew what to expect. What happens, is it manageable? Has anyone else survived years maintaining it only in the lymph without spread to bones or organs? Has lymphadenopathy cased any problems ? there is no data out there yet for only this type of metastasis. Please reply with any info, stories or experiences.

My father just began Xtandi, and is on Lupron.

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  • I have had stage 4 in the bone and lymph nodes for 11 plus years, I beleive the lymph nodes are much easier to control than if were in the bone, and my Lymph disease has not spread to any organs as My liver ,kidney ,Pancreas, ect.. are all pristine. I would have the medical oncologist check for possible small cell with a CGA Chromgrannin test and there are other blood markers for that too they should check. Genetic testing for mutaions is very helpful to find targeted meds that are more likely to work better with certain mutation. What was his Gleason score and what treatments has he done, what is the current psa,> In the words of a very wise man, find the best Medical Oncologist that only specializes only in Prostate Cancer , these are usually found in Acedemia, at major cancer centers affiliated with teaching/research hospitals. I wish you the best, we are all here for you.

    Dan

  • Dan my father had Gleason 9, (diagnosed 2014) RP and radiation, Lupron, casodex 2015-2016 PSA undetectable. Then Dec 2016 PSA increased gradually from .04 to 1.6- he went to Mayo Clinic PET scan showed no mets possible area of growth near lilac node. Continued only Lupron. Since then his PSA began to increase quickly. June 2017 2.1 July 3.2 and on August 1st he got a choline 11 PET scan at Mayo (PSA 3.6). They recommended chemo since he had adenocardinoma and prostate mets to lymph nodes traced from pelvic area nodes up his spine trought his chest and up till cervical area. Subclsnian node enlarged. His oncologist here a USC Keck suggested he begin with xtandi. At this time my parents had planned a vacation, 1 month Europe trip leaving August 9th. My father was worried about starting xtandi, as he refused chemo because that wasn't his primary oncologist and the side effect of losing feeling to hands and feet would stop him from gardening ( his favorite). So now he has been on Xtandi 2 weeks. We rally don't know how much is has brought down his psa since he didn't have a pre- blood draw .His PSA yesterday was 4.19.

    My father is a. Very active 77 year old, he is more active then a 50 year old. Has no pain, and no issues except some urine incont. From his RP. Lupron injections he complains about the pain for a few days ( Tylenol or Advil helps) , Xtandi he has only experienced tiredness, and maybe a little decreases appetite. Supplements he is on D3, pomagranite ( tumeric and green tea stopped because interfering with xtandi) . He also is on plavix (coronary stent) vytorin, and newly diagnosed diabetic on 1000mg metformin..

  • To me this all sounds very good, However I kept my fingers in ice water during infusion of chemo 12 cycles and never had any fingernail problem or nueropathy in hands, I sucked on ice cubes to maintain tastebuds and put by feet on gel ice packs and never saw much of any feeling loss in feet, It is my guess the xtandi will work well for him, time will tell, I got over 2 years out of it, Those are still very low psa numbers, zolodex in a pellet they inject into the belly instead of lupron, still a bit painful but bearable, I have heard more guys complain about the long needle of lupron, but either way you get used to it. I am of the opinion your father will do well for a long time, It can sometimes take xtandi a little while to work and sometimes it goes up a little and then back down more, It is important to get the most out of each of these therapies. Sometimes a small cell cancer will make very little psa, it is important to rule that out as that can be a tough player(small cell) and when it is found it is usually in High Gleason guys, though it is a very small percentage in Prostate who have small cell., I am and have always been a Gleason10, never had small cell.Early chemo has shown to increase survival recently. Hopefully the xtandi will send psa into undetectable range, he is not far from that, however you achieve a complete remission is a good thing , meaning psa undetectable and scans clear.

    DISCLAIMER, I AM NOT A DOCTOR,Just a long time patient who has read a lot, and been through most all of the therapies. It is good your dad is so active, it is very important to go on living as you always did after a cancer dx.

    I wish you the best and keep us posted

    ps. I always took xtandi later in the evening then a few hours later went to bed and just slept another hour or 2 in the morning if I was tired ,but doing it at night seemed to make me feel more awake in the daytime.

    Dan

  • Hi There

    Yes I also have the same,I was diagnosed in Feb 2017

    G9 T 3-4

    Pelvic area running up to chest

    Can't tell you a lot really because also new to me just wanted to let you Dad know he's not on his own if that is any help.

    I turned down chemotherapy because it would have only extended my life by 6 months and I felt to go through 6 months of that it wasn't worth it?

    At the moment I am doing great little bit tired somedays but apart from that

    life is good.

    Taken Zyitga and Zoldex PSA is undecteable for know and hopefully for a long time....

    Keep strong the mind is a powerful thing 👍

  • Those are mean statistics Apollo, some will do much better. Anytime we can achieve a complete remission, meaning scans resolved and psa UD, in any cancer it is a very good thing for increased survival. Modern chemo with proper premeds for just 6 cycles was very tolerable for me, and I stayed active, I did 12 cycles so far.

  • My oncologist is not the most positive individual all info given to me at the time of diagnosis seemed very negative, it's only since learning more and taking further advice have I realised you can have a much longer timescale than the stats my oncologist gave. I would definitely look at chemo as an option now particularly when you see the results it's given others on here. The new trial done in the Marsdon hospital by Dr Dearnaley in the UK has also stated that they have started doing radiation treatment on pelvic nodes where advanced cancer is diagnosed, it was in all the papers here this week. I am hoping to see Dr Dearnaley in the coming weeks and will keep you all posted.

  • Sounds good, I know Marsden is where Joann Delbono invented zytiga, i have a feeling that is a very good research hospital over there, I wish you the best, keep kicking the bastard ,and never give up!

    Dan

  • 3 years ago my body was one big cancerous lymph node factory. I had so many enlarged nodes they quit counting at 30 or so. Today, ALL my nodes are normal size. It took 2 years for the nodes in my chest area to return to normal.

  • What treatments are you on to have this type of result? I had local lymph node involvement at diagnosis and expect that this might be my path too.

  • Started with psa at 850, with 3 bone mets and a zillion infected nodes.Went to casodex right away, 3 weeks later started Lupron which I'm still on. Around 5 weeks after start of casodex, went through 6 rounds of chemo. It took 2 years for the nodes in my chest to return to normal. took 1 year for the nodes in my pelvic area to normalize. Currently, psa at 0.08 and my original 3 mets on bones are barely detectable. Currently using only lupron as Casodex caused a slight psa rise. Have been approved for Provenge when the time comes. Hope this helps.

  • which chemo treatment? congrats on the great results. I'm sure you were shaken at the time of diagnosis. I had RP and adjuvant radiation in my first six months after diagnosis (PSA 89, Gleason 9, local mets in 7 lymphnodes). After 18 months, my PSA is starting to rise and I'm currently at 1.89. We did a Axumin scan in June but didn't locate anything. I am currently on 3 month Lupron shots and added Bicalutamide about 5 weeks ago. I'll get another PSA test next week.

  • I used Docetaxel as my chemo. Shaken? Well sort of. Thing is my entire life has been one big all or nothing war, this cancer thing is just another ass to kick.

  • That is awesome results Nameless, You have certainly done well. I suspect the early chemo did a lot of that for you.

  • The early chemo was literally a life saver, I could care less what others here say. The people who are trending to early Zytiga are missing the boat. Those damn pseudo -intellectuals that wear white jackets can't come up with anything new so they simply change the sequence of meds. 3 years after being told I was dying, I'm undetectable with Provenge, Zytiga, Xtandi, more Docetaxel and others still in my back pocket. I'm going to be just like you Dan59, kick this stuff in the rear for at least a decade, then become somewhat concerned. Your my fu*king hero and I don't do the hero thing. Men like you Dan59 lead the rest of us into battle.

  • Yes you are Nameless, and not to mention the many many new things in Clinical trials That will be approved in the coming decade you also have in your back pocket, I know when zytiga got approved we all breathed a sigh of relief , and the order of magnitude advancements made in the last decade to be repeated in this next decade. They just may find a way to shut Prostate Cancer off in the next decade. Women have been using early chemo in BCa for well over a decade, we only got into it last year, clearly it can be a game changer in the early going, as the results now say.

    I like your attitude!

    Dan

  • My husband was diagnosed in 2009, Gleason 9, PSA 40, mets only in nodes around the kidneys. Because of the locations of the mets, surgery or RT were ruled out. He refused chemo at that point because he was teaching, so went on ADT in its many forms. Nodes shrank on one form, then others grew only to be killed off by another form. But the new nodes were always higher up the chain. Last year, in the chest a node between the aorta and spine was enlarged. A clinical trial didn't work last summer. Mutations of CTC's were found not to be of the treatable type. Because the node was inaccessible for biopsy, he couldn't get into any other trials. Now he is awaiting his 10th docetaxel infusion. Chemo fog is starting to cause problems along with the fatigue and malaise. The oncologist plans to keep on dosing him as long as he can stand it. The PSA has only dropped 2 points since starting the chemo, last time a drop of only 0.02, but the doctor was happy that it was still moving in the right direction. I am concerned that at this point the cure seems worse than the disease.

  • Last year I was diagnosed with T3N1 where one pelvic lymph node was "100% cancer". Had surgery, 38 rounds of radiation, Lupron with Zytiga added to the mix later. So far so good.

    Could you share some of your fathers stats (PSA when found, Gleason score, what treatments he has had, etc.)?

    Depending on when he was diagnosed you may want to ask his medical oncologist about following the Stampede trial procedure of taking Lupron with Zytiga. It had shown a remarkable increase in overall survival. A link is listed below.

    nejm.org/doi/full/10.1056/N...

  • I was hit with a GL 7(4+3), PSA at 840 Stage IV mets to ureter lymph nodes. Stents were placed to keep it opened. Started ADT(Lupron and Casodex) and did 6 Taxotere sessions, but PSA was still in teens. MedOnc spoke with Tumor Board and no one would say give more chemos - he then told me that he would continue it until I tapped out or plateaued. I did 9 more chemos and PSA hit 0.2 in 08/16 and now I got it down to 0.1.

    Intermittent fasting, supplements and exercise. Fight on!

    theloopnewspaper.com/story/2016/09/03/community/september-is-prostate-cancer-awareness-month/2897.html

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