My latest (monthly) PSA went from 10.4 to 20.9~~and my every 3 months Axumin Pet Scan shows: (last only showed 2 lymph nodes in the pelvic area.)
Musculoskeletal:
There are multiple radiotracer avid osseous lesions, some of the lesions are sclerotic while others do not have underlying definite CT correlate. Representative target lesions as follows:
* Right humeral head, SUV 4.1 compared to prior SUV 2.2
* Left clavicle, medial aspect, SUV 4.8 compared to prior SUV 3.4.
* Right clavicle, medial aspect, SUV 4.0 compared to prior SUV 2.5.
* T5 vertebra, left costovertebral joint, SUV 4.3 compared to prior SUV 3.6.
* T12 vertebra, SUV 6.4 compared to prior background bone marrow activity.
**radiation oncologist showed me the pictures from pet scan and said they were all still rather small spots.
**we saw an "Elder Attorney" for advice this past year ~~me being 63 with issues(stage 4 prostate cancer) and my partner being 70 with a recent Lewy body dementia diagnosis. He said we should get married. After a short 43 year courtship we had a lovely VERY small outdoor ceremony yesterday ~~hence the cake in photograph.
My oncologist says that the Xtandi is obviously not working anymore...and my options seem to be:
door #1 More Chemotherapy
door # 2. More radiation via Radium 223 (Xofigo)
door # 3. something experimental/in trial/etc.
door # 4. She's getting back with me next week after research.
None of my options sound so great. I iced my hands and feet during chemo and hated it...and it sucks. The radiation done this way causes extreme fatigue, etc. Number 3 is a complete unknown....so what can I hope for "behind door #4" ?
Does anyone know where this could go from here? Been on the journey since Jan 14, 2014...so 7 years in...Done all the basic things at least once (some twice). Still feel amazingly good.(thank you Jesus) But it looks like "on Paper"... I'm skating on some awfully thin ice.
Living in South Florida, (Ft. Lauderdale) and hoping to be married as long as we've been "engaged"....LOL.
gJohn
**the cake is being "finished up" by a long time friend who made the top layer and used our original wedding topper from when it was "Illegal" for two men to marry in 1979...after we had met in 1977.
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Looking good Great John .. Wishing you all the best.. Nice looking cake for a special occasion. Still following you and yours and hope to for many years to come (but I'm not sure another 43 years year is reasonable--you would be old by then) Doug
Congrats to both of you ! Wishing you both many happy years together , and hope you can find some treatment that will 'knockback' this dam awful disease. Kim x
it seems like the available options...all suck and have limited success. I'm going to be optimistic and hope for a miracle whichever of the "doors" I choose.gJohn
If I message you my address, will you send me a slice of that cake? Congratulations on your long overdue marriage. Oh, why isn't the dog in the photo?
I've been running around taking slices to neighbors...it was even better than it looked. It was my friend's mother recipe for carrot cake and with a filling inside it of peaches ! ! !
Congrats, John, and that cake looks amazing!!! I remember when my dad saw Dr. Myers last, he was talking about Xofigo rechallenges as something that he was looking into for some patients, would that be what's happening here, or have you not tried Xofigo as of yet? Would BAT be helpful in your case?
And if those mets were really small, that means you're still ahead of the curve and got time to figure out a strategy!
Then, Xofigo could be really important - if I understood correctly, it is particularly effective with small and relatively few mets, as in your case. Also, what about adding the third-generation hormonal, was it Nubeqa, that was approved last year?
I hate to hear of your progression. But very happy to hear of your wedding. Congratulations! I to have had some issues in 2020 and have started Chemo again but while looking for other treatments. I now have bilateral nephrostomy tubes draining my kidneys hoping chemo will shrink the lymph nodes blocking the uters. I hope the both of us can find a treatment that will give us a durable remission. I wish you and your husband a happy and wonderful life together. I will be following you to see what your next treatment will be. I wish you the best of luck!
Congratulations John, to you and your partner. I had to start chemo again. (Cabazitaxel) There really were no more options for me. Also they started Zometa. Bone lesions on some ribs and femur. If I had to start again. I wouldn't. I've never been more sick in my life. MO says she can lower the dose or stop. Anyways I won't get into anything else. The main thing is you have to have some quality left with your partner. Even if it is for a shorter time then you hoped for. Ralph
This is what I had figured with the chemo and also what I fear with the radium 223. I’m afraid the nausea the weakness and fatigue will kind of throw quality of life out the window. These are very difficult decisions we all are facing. Still optimistic to make it through for our first anniversary in a year! All the best to you Ralph and the new year! Big hugs, John.
A great cake! Congratulations! In some ways, I feel like you are being to limiting in your view of options. I think back and I seem to remember you trying other alternative treatments. I am not suggesting that but wondering if there isn't something that is complementary that could help slow things down.
The whole meditation thing, for me, is important to finding the answers that are right for me or finding out where to look. Those deep breathes, the calm, the quiet, my heart beat (or drum beat) center me, ground me and bring the world into better focus. Here's one I like and maybe you will. It's called "Be the Mountain" youtube.com/watch?v=LOT0nci...
What comes to you may come later but it is an awesome decision and you will make the right one with your partner. I believe that when all the pieces are in the right place, it feels right too. You still have plenty of life left. It's just a matter of how you spend it!
Let us know how you are doing and what you decide because we will need to know the secrets that are revealed to you!
Thank you so much. I do try to meditate and spend time just sitting in the garden relaxing every day in a state of bliss. I will listen to your link as well. I did seem to not have any good effects on PSA are scans from birm and also from fenben. That said, I may try them again.
If you have a naturopath that deals with cancer patients, they may be able to give you guidance. Chinese herb may be helpful but should be checked against other mediations.
Whatever you do, please think about what is most important to you about your life and then see what options you have on your table support that or those aspects of your life that are most important.
I wish you and your husband what will bring you the greatest joy, health and longevity, in whatever order you both think is the best!
Looked into mushrooms? I take Turkey Tail and Community Defense capsules for their anti cancer and immunity boosting properties. It appears that all mushroom boost our immunity but they must be cooked first.
I have been doing mushroom supplements until this last crazy raising of my PSA and spread of my metastasis... stopped a bunch of those supplements and I’m enjoying not swallowing so many pills at least.
I'm not even close to being in your situation, and all I have to suggest is mebendazole/fenbendazole. If your liver is OK with it, and it doesn't interfere with whatever standard treatment you choose, is there anything to lose by trying it? I'm sure you've read all about it, so I have nothing to add.
I love how you approach all this catastrophic crap life keeps shoving out - I'm sure your psychological stamina and self-care, your sheer strength and positivity of outlook, have a lot to do with how well you've done so far. Blessings on your marriage and on you and your new/old hubbie, and I am hoping for only the best for you.
I did Birm for almost a year and then fenben for almost as long. I saw no positive results from either on cancer suppression, however the BIRM helped me with the initial side effects from adding Xtandi to my regimen.
Lots of smart folks here, but have you sought professional 2nd opinions on your situation? I guess if pain is not yet a big issue, spot SBRT is not suggested yet?
When I only had 3 spots (this past January) I had the spots zapped for about 10 sessions. The one bone spot disappeared and the other two lymph node spots were reduced by more than Half. My PSA after treatment was around 1.0 That’s why I am so surprised to have such a large amount of spread so quickly after that treatment and a PSA rise to 20.9 so quickly. The radiation oncologist back in January February was actually hoping for a cure or at least long-term remission from the treatment then. I appear to of gotten just the opposite.
damn beast!! So sorry of course!! Wish I had anything eles helpful to contribute. ... did Tall_allen reply? of course, you could message him.....he may be preoccupied with something else...I notice he hasn't been as active here for the last day or so. Hope he hasn't had unexpected problems!!!!
Most docs just won't do it. It's about them, not you. It's not an option for them.
Try to get a second opinion from Sartor at Tulane. Or from any of the other docs involved with Denemead's BAT clinical trials. See if Sartor will do a telehealth consult.
It doesn't work for everyone. But when it does, it works well.
It would seem that if you have been castrated that might make you a better candidate, not a worse one.
Bottom line, get a second opinion from someone who actually employs the treatment.
Congratulations GJohn. I would align with Veda on below to seek a remote consult for “per protocol “ compassionate BAT personal trial while you are still feeling well. If PSA takes off strongly from the first T injection then you can just stop. May help and also improve QOL and married life. Other thought would be veyonda with low dose RT such as in the DARRT-1 trial. Problem is travel to Australia at this time.
John, I gave you a 'Like' since there aren't any other options; however, the 'Like ' is only for the pleasant parts of your post.
I'm sorry that you are having to deal with this nasty disease that we are still are in the dark regarding successful treatments after over a hundred years of research! Happy to hear that you are feeling good despite the scan results and discouraging numbers.
Congratulations on your wedding, best wishes to you both.
I made the very difficult decision to stop conventional treatment back in early 2017 due to severe side effects and have only been taking Essiac tincture and CBD oil since then.
Four years later I'm doing fine and have never regretted that decision.
If you run out of options then perhaps you might consider trying them too.
If you click on my avatar picture you’ll be able to read my bio and some posts I started about those supplements and my own cancer journey.
I'm the first to admit that there's no peer reviewed scientific evidence to show that Essiac or CBD oil are effective, but I've been taking them for 4 years and am very happy with my results so far.
When I stopped conventional treatment in early 2017 my oncologist assured me that my PSA would keep continually rising and my mets would spread further.
However, 4 years later my PSA is virtually the same as when I was first diagnosed December 2016 and my 2020 PSMA PET CT scan was better than my 2016 PSMA PET CT scan.
I still see my oncologist every 3 months so he can keep a track of my progress.
He is amazed how well I'm doing as it's over 4 years since I was first diagnosed. He tells me to just keep doing what I've been doing because it seems to be working for me.
Here's a link to the post I started on this forum about my own cancer journey.
John firstly I want to congratulate you and your husband not only on your marriage but your enduring loving relationship. For sometime now I have admired your positive contribution to this site.
You and your husband have both endured some lousy health trials and diagnosis over the last few years but you have approached them with a level of support and love for each other that is truly admirable.
Plus you have helped so many other people on this site with the sharing of your journey with this disease.
I wish you and your husband many more years of happiness and love for each other.
Plus yes, the cake looked beautiful and delicious.
Thanks John. I Just wanted to let you know that your posts have touched me in many ways. You display such strength and positivity, not just in dealing with your journey with this disease, but in your love for your husband and the support you offer him on his journey. I know it can’t be easy, but your brilliant attitude to life shines through. Just needed to let you know.
John. CongrTs to you and your partner, so sorry to hear that the monster has been so aggressive lately. Just one battle. So hopefully there’s more battles to fight , 🙏🙏🙏🙏. Good luck warrior and happiness to you both.
Congratulations greatjohn and to your spouse on your marriage! I can only wish you two the best in the coming years. On another note, thanks is not enough for your insight, humor and perseverance; your postss are important contributions to this forum.
Congratulations 🎉🍾🎈 on your marriage and long time love affair. My husband is your age been fighting this beast for 10 years. Was in lymph nodes only however recent bone scans show small spots. Clavicle and ribs. Going to try clinical trial with Xofigo and oliparb. Praying will work
Congratulations John! I don't write often but read a few times a week. Your optimism, strength and humor have always been appreciated! The wedding was beautiful I am sure. Honeymoon?
I find it surprising that you and my husband are in almost exactly the same boat. Dx in 2017. Chemo then Casodex, Lupron, Zytiga until March 2020 when he contracted Legionnaires Disease. He almost died. They took him off Zytiga for 6 weeks then back on again. That must've reset something because his PSA started rising. They put him on Xtandi 12-5-20 and yesterday's bloodwork shows his PSA at 10.5 (up again - but better than where he started at 1,600) and his liver enzymes are thru the roof. Oncology appt. Monday but wondering what's behind that door as well. Chemo was horrible for him too.
Isn't immunotherapy a valid option for advanced prostate cancer?
Thanks for sharing your and your husband’s journey. I have already done Provenge just after chemo therapy about three years ago. So I don’t think I have an immuno therapy now as an option...I’ve asked for them to try to genotype my cancer biopsies again from the blood and I’m waiting for results on that hoping for help with a direction on treatment. Best of luck to your husband and happiness in the new year!
Congratulations on your wedding which makes both unions legal. God was blessing you the first time with all the years you have together but now you are truly joined. In sorry to hear the negative information but you have a community around you to help both of you and they are many times God's angels on earth. Much happiness I send for your marriage and prayers for both of you in your continuing journey. 🙏🙏❤️. Arlis
I hope you find joy in being "officially" married, clearly you have been for quite awhile now. Sorry for this change in your disease and I don't feel any need to tell you to be positive. Your in my thoughts.
You sound incredible to me, congratulations to the pair of you. You have to have a sense of humour to cope. When anyone asks me aboutmy husband, l say he's my current husband and we've been married 51years omg l was a teenager when we married. He managed to get through pancreatic cancer would you believe nearly 30 years ago, Doctors said he was a miracle. Now its his turn to support me in my battle with Ovarion cancer lifes not fair sometimes. But we have a good life & spend a lot
Of our time laughing and really getting on with what we'd Normally do, its the only way.
Keep on battling and stay positive and yes your cake did look amazing. All stay safe ,& keep positive. Love & hugs SheilaF
Thanks for sharing part of your journey with me and with us all. Yes humor and “just doing it” are a big part of the daily routine. And of course staying focused on one day at a time.
Congrats John. Leave in peace with your husband. I’m a novice so I’ve got no great words of advice on future treatments, but thank you for sharing your experiences. Stay strong and know you’re not alone. 💪🌈👏
Have you heard of a doctor in Fort Lauderdale named Dr. Gary Onik.? To my knowledge, he may be the only doc who has cured numerous men (including himself) of metastatic prostate cancer (as well as a few other types of cancer). This is a paper he published last August:
An old friend from here tried Dr. Onik’s treatment. Unfortunately it did not work for him. Some may remember Paul from Perth, Australia.!he told me there were 11 in his group and there were three complete responses. I think he must have been in the first group because that was back a few years. This also sounds very much like what Jason Williams is doing in Mexico City. He is from Atlanta. His FB page is simply “cancer immunotherapy”. I really wanted to do intratumoral injections with the APCEDEN vaccines that cleared 30 of my tumors including several bone mets to maybe get rid of the primary but nobody in Delhi would do it because it was outside what they had been approved for. Of course it’s out of pocket and not everyone is able to do that.
First, I wish I had treatment recommendations, but I know others on the site are more qualified! Regardless, I know you will get some good suggestions. Second, you are clearly the most popular person on our site! You are always a good friend to everyone here ... and the number of responses you always get is evidence that we all care about you!. Last, but not least, congratulations on your wedding! Such happy memories! The wedding cake is beautiful! Enjoy the moment!
I'm humbled James by your comments and by the many here. Thanks in some ways the last two days of "married" life have been beautiful. I wish I could make our medical conditions magically disappear...but we are trying to approach them wisely, but also with courage to accept each day's difficulties as they come and keep skipping along the path. Some wonderful people have suggested things I was not familiar with and will check out and bring up to my Oncologist when we speak about "the future" this next week. Best to you and yours in the New Year!big hugs,
Carrot cake!! Love that kind of cake. Good choice. Have you already looked into Lu177? Paige and someone else went to the place I talked to in Delhi where I got my vaccines to have it done. Paige’s husband I know had three bone mets I believe resolve from Lu177. I know you need to be PSMA avid, but not sure what value you need to have. I was around 13-14 in my prostate and they were going to do it but I ended up just having it out and having more vaccines made over there since I know it keeps me stable. Dr Ishita Sen at Fortis in New Delhi does it. Her husband did three treatment a month apart last fall during COVID as did the other guy from here. I guess you need to stay in the hotel. They were able to get an emergency medical visa or something like that. With flights it is probably about 20,000.00. That includes all scans, bloodwork, hospital charges, doctor visits etc. The treatment is about 14K itself for the three treatments. Congrats on getting married. Chris
Sorry to hear about your cancer progression. Perhaps you should consider treatment with Lu 177 PSMA or Lu 177 PSMA and Ac 225 PSMA (tandem treatment) abroad if you could afford it and are willing to travel during the pandemic. There are many places abroad, India, England, Israel, may be Germany, Austria, may be Australia etc.
So, I started my diet last week and what do I see here? "A wonderful wedding cake" and those (I'll call them cupcakes) wonderful looking chocolate cupcakes.
The first thing I did was start to sing "Keep your eye on the prize - oh Lord"....
Ahhhh you know how to hurt a guy.... I was so angry I slapped my blowup doll...
Just wanted to remind you that they say "if you want to eat something that will make you cut back on your sex life? Just eat wedding cake".....
Congratulations and may you both be happy with each other until the end of time...
Hopefully, whatever option you pick to fight those "tiny pricks" works. Keep posting but please NO MORE PICS OF FOOD...
**To hear this video click on the title on the top of the video **
As for the doors, have you had neuropathy with prior chemo? Or were you icing for preventive reasons? I'm on my fourth flavor of chemo since diagnosis, third flavor in the past year, something like 17 cycles total. I've iced nothing and have no serious issues. My hair has even stopped falling out. All I get is minor intermittent discomfort in my toes. All I can complain about is serious fatigue and digestive issues and lack of appetite. The digestive and appetite issues may be mpre significant for a foodie like you.
Best of luck! I hope the ice is thicker than you think.
Thanks Tom... yes, how are you dealing with neuropathy. I lost half of one of my big toes nails during the first round of chemo. Even with the icing. And I just was so exhausted and tired. With the new exhaustion and tiredness that I already have adding more on top of that sounds Scary.
My oncologist recommend taking a B complex vitamin to help with neuropathy and it seems to help. I'm also convinced that exercise / being active helps too. Neuropathy has generally been a non-issue for me. I have minor symptoms of it, but they haven't gotten significantly worse with time. I mention this because your post sounded like you were complaining about the discomfort of icing, and I just wanted to point out that not everybody gets severe neuropathy.
Exhaustion/Fatigue is a scary. My previous chemo hit me so hard that I was asking my wife to bring me things from the kitchen so I could save all my energy to get myself to the toilet as needed. I honestly felt one step away from needing help with self-care.
Cancer is a cruel and difficult disease which frequently has us asking if we'd prefer a better, but shorter life, or a longer, lower quality one. It's a really tough decision if you don't have any symptoms of the disease.
Congratulations ❤️and that cake! Peaches and carrot cake who came up with that idea? I’m going to try that soon and we will think of you two wishing you the best in 2021!
We appreciate you not quitting your day job.......... since your job is, wearing a custom tee shirt with you name imprinted on it and standing in an optomologist's exam room.
Congratulations on your marriage!The next treatment once the second-line hormonals like Xtandi or Zytiga fail per SOC would be Jevtana. Side effects are supposed to be easier to handle than taxotere chemo.
I see that all the lesions identified by the PET/Axumin are to the bone. You should ask about more targeted radiation therapy.
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