My thoughts and emotions after living almost two years with cancer, and dealing with what is my first obvious treatment failure.
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tom67inMA
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โข
Hey Tom ...read your blog. Lots of introspect there. Lots of sensitivity. Nice work .
Hereโs an interesting twist related to your thoughts of what treatment failure is. Youโre facing the classic โ this soc adt treatment lasted 22 months and failed โ scenario. But that โ failure โ can come at you from different angles , in unexpected ways. Turns out that monthly psa test we all hold breaths about isnโt necessarily the โ end all - be all โ. Sometimes the treatments just arenโt going to sustain us in the way we hoped and ... maybe .... itโs not a good thing to rely too heavily on those emotionally .. even if they are keeping our bug asleep. The price of keeping our bug asleep can be ... of itself... what claims us too. Itโs the classic ..danged if you donโt, danged if you do ... All of us advanced metastatic stage 4 guys already see the handwriting on the wall, we all know that train is bearing down on us , and there is no avoiding the inevitable ... we just try to hold off that end as long as possible.
Anyway back to the โ twist โ .... my last 22 months have been and still are .... testosterone undetectable, and PSA undetectable. Perfect as you could ever want in these conditions. Adt , tho, has screwed my bp, my bg and my cardiac... as it often does in people and I have successfully managed those as well .... Still ... for the last three months , every single test of the 9 monthly blood tests I get ... have continually marched downward...click by click by click .. itโs like someone slowly turning down the volume on my amplifier . This is , no doubt, due to those successful adt, bg, bp , and cardiac treatments and my body just not able to deal with them. Basically just having a successful adt continue isnโt necessarily the good thing as weโd like it to be .... be careful what you wish for ...and I guess that sometimes ...no matter what ...there is just no stopping the eventuality...its having its way no matter what. Guess in my clumsy way Iโm just trying to say that donโt you despair too much because maybe there is a bit of a silver lining in that adt failure after all. You arenโt in the โ the fix kills you too โ mode yet ...thatโs a good thing. Maybe switching meds will change things up and your body wonโt get to the โ fix kill โ mode as soon. It may have actually done you a favor ...yayahahahaya yayahahahaya. It hard to wrap your head around โ that โ isnโt it ? Hang in there buddy, things could get lots worse ... what seems so awful may not actually be as bad in the moment as it seems at first.
Just sayโin ๐ผ๐ป๐ธ๐โค๏ธโค๏ธโค๏ธ
Thanks so much for your thoughtful and well thought out reply. It's dialogs like this that make this site so helpful. You have given me a healthy sense of perspective.
I still can't explain my experience in 2019, other than to say it gave me unrealistic expectations for what life with metastatic cancer would be like. This year might blood pressure is creeping up, and my fitness is in the toilet. In my more optimistic moments, I see the possibility that this may force me into a study of what could be the next great cancer drug. Heck, I'd take Hidden 's experience where the study is a bust but he is one of the patients that had a relatively great outcome. Probability doesn't matter, only possibility.
I'm very glad you (and whimpy) are here on the forum. You both give consistently useful advice and have a valuable sense of humor about the whole experience.
Thank you brother ... and that Scott has to be one of the luckiest guys around. I should rub my rabbits foot on him yayahahahaya He and j-o-h-n and a few others are the key guys to lift off some the heavy gloom that can settle here ... thank goodness for those guys that persist trying to lift things - elevate the mood all the time. Itโs the invaluable contributions they make that makes things feel so much better.
Itโs probably hard to recognize sometimes when you are feeling all screwed ( and all your brothers here know THAT feeling ) to step back and remember that you Still have some great athletic abIlities and are early in your PCa treatment journey .... lots of other likely effective delaying treatments plus good physical shape ... dang dooooode ... thatโs some great โ stuff โ to have in hand on this ship. Youโve almost certainly got years and years left. Who knows , maybe in a couple years that new treatment may be able to keep you alive indefinitely... not a cure maybe but next best thing... like with aids. Weโre not gonna let this stuff kick our a$$ .... right ???? Heck NO .... ๐ช๐ช๐ช๐ช๐ชyayahahahaya yayahahahaya Weโll find ways to exhaust ourselves enjoying the heck out of life ... long before it can take us. Right .... Grrrrrrrrrr. ( yayahahahaya not a real strong grrrrrrrrrr )
๐๐๐๐๐๐๐๐โค๏ธโค๏ธ
โข in reply toKaliber
Today ! We are alive ... our spirits will live on..our bodies go back to dust . No living thing escapes this. Peace to friend. I hope your suffering is somehow more bearable . My hat goes off to you .. ๐ท๐ค๐ฝ
Kaliberโข in reply to
Hey buddy ... chit happens ... we make the best with what we have. Make no mistake ... Iโm in โ party time โ mode here ... trying to see what I can do โ today โ that is fun and entertaining... Iโm not having โ ANY โ downer thoughts or sitting around feeling sorry for myself . No time for that .... when I keel over on the floor they will have to pry the kazoo out of my mouth and take the pointy party hat off my head ... shovel away the confetti ... figuratively speaking. yayahahahaya yayahahahaya. Iโm screwed ... yea .. so screw all that yayahahahaya yayahahahaya. Iโm way not dead yet . Herze an interesting tid bit : something about all this has changed me and I donโt get hangovers anymore ... how kewl is that ??? Yayahahahaya
Just sayโin ๐ฆ๐ต๐ต๐ตโค๏ธโค๏ธโค๏ธ
โข in reply toKaliber
No hangover? I might drink again if that were true for me . I canโt handle it any more . Only just a few . Enjoy!
Kaliberโข in reply to
Yayahahahaya ๐๐๐๐
ROFL! Your pointy party hat and confetti attitude is what I aspire to be. My inborn tendency is to play the tortured artist, but I'm working on changing that.
Yea I did that to exhaustion too, early on ... then I had a wake up call ..... thinking โ idiot โ , Iโm sitting here wasting my best days - months ( my , all of us, best times is right now .. none of us are going to be better next year or possibly even next month ) ... now is the time to enjoy the heck out of what ever I can , better to be exhausted from touring and / or having fun than the ADT / PCa sucking the life out of me. As much as possible anyway. ....
Letโs see now, large 12โ X 12โ black soft rubber tarp ... check . Giant industrial #10 size jar of mayonnaise... check , phantom of the opera mask with extra large mustache... check . Cigar box full of rubber clown noses ... check ... , continuous duty commercial quality โ 3 speed โ back of the hand Oster massager ... check . Pointy party hats , at least 5 ... Check . A box of tenor kazoos... check , confetti machine and 7 channel 1000 watt sound system ... check .... and 3 ....er ... ah ... โ additional ..... well you fill in the rest to suit your tastes ... preferably human ... yayahahahaya yayahahahaya. ( Walter Mitty is alive and well in my head yayahahahaya). ..... haaaaaaaa bet you didnโt fill in the blank with โ 3 water melons and a giant box of large rubber bands didja โ. Yayahahahaya
Just sayโin ...๐๐๐๐๐
Ok ..for those that gave the watermelon and rubber band thing a blank stare ... search YouTube for : watermelons and rubber bands to see what that is ..
just sayโin
I'm afraid
Sounds like you high jacked j-o-h-n's car. He keeps the good stuff under the front seat.
Yayahahahaya problem he lives on the opposite side of the country. I have fun talking about drinking and I do have a glass of wine sometimes ...but in general alcohol conflicts with some of my meds and I can only use it infrequently . Kaiser wonโt let me use cannabis, booze will drive my monthly blood tests high ... man ... what has the world come to. Yayahahahaya.
I appreciate you optimism, but you may have missed that I have neuroendocrine cancer in addition to intraductal carcinoma. There are lots of options left for the carcinoma, but for NEPCa it's basically chemo, and that failed for me in about 9 months. We can retry chemo, or an off label drug, or find a study. However, as you point out my relative health probably will allow me several attempts and failures before I'm in dire straits.
โข in reply totom67inMA
I took self humiliation and APC very hard my first few years. I hadnโt found this cite or any other until three years in . I try to cheer the crowd a bit and lift myself up at the same time. The irony of macho men now servicing without t is a gem of a story to tell the kids about ? We are here today brother . We can empathize with each other . We are all going to get crunched .. sooner or later . Good to have moral support along the way. If it not even more that the warriors cry . Live for today ! wife and I are packing up trimmings and going to the dump! Today is a good day ! Thanks for your kindness.
tom67inMAโข in reply to
I had a discussion on Facebook with a colon cancer survivor about the simple joys of taking trash to the dump. It's one of those "normal life" things that I now enjoy as much as I used to enjoy a trip to Disney World.
โข in reply totom67inMA
Getting rid of our junk is great . If we could just rid ourselves of our negative baggage from our past , thatโs the best day ever ? Have a good day today and take some time off of thinking about this never ending disease ? Stay strong ๐ช๐ผ
Sorry...what is BG?
Pretty sure it is his Blood Glucose
Correctomundo ...๐๐๐๐
Do I win a prize or advance to the next level!!!
No but you do get a crutch and / or a back brace ( no charge to you on your Medicare ... just call the number on your screen ) .... if you are like me, youโll probably need it .... yayahahahaya . A camo ghille suit to hide in the yard from your caregiver is a plus too. My wife โ the hammer โ can spot my ghille suit at 100 yards. Party pooper yayahahahaya.
๐....and I just went on Medicare... My wife is my crutch...I cant stand myself!!!!....and my camo is weakness!!
Yayahahahaya. Whimpy-p is the expert here on ghille suit camo yayahahahaya ( his ghille suit photo in a recent post is great ). Yea itโs a problem when ( like me ) your caregiver is your wife. They arenโt fooled for a minute by those when you are trying to hide in the yard yayahahahaya. Worse yet , is hunkering down in a pile of bushes .... and suddenly the one next to you moves and itโs your wife yayahahahaya oh well.
๐๐๐๐โค๏ธโค๏ธ
Btw: I can stand but not walk very far ( 15 - 20 - 30 feet ) ... doing the painful Lupron Xtandi shuffle ... I bought a etrike to get around on ... I can zoom 16mph up to the shopping center ( itโll go 32 miles, in bike lanes ) and throw a couple switches and drive 1 mph inside stores ... it looks like an electric moped with two wheels in the back and gets some โ looks โ ( like Iโm in there on a motor scooter, which I am yayahahahaya) but no one ever says anything. You can get a lift for your vehicle and take it to the park or zoo or movies ( after Covid ) or zoom away on your local hike and bike trails ... it isnโt walking but is a great , fun, workaround for walking issues brought on by PCa and or ADT treatments and improves your mobility and QOL dramatically.
Just sayโin ๐ช๐ช๐ช๐๐๐โค๏ธโค๏ธ
So funny...you definitely an inspiration...a true warrior... Scotty certainly didnt Wimp out on his suit for sure!!!
Remember: buzzed driving is the same as drunk driving. Spill in aisle 13, blood everywhere. Oh wait, it's urine in a mayonnaise jar. Clearance item, aisle 13.
โข in reply toSPEEDYX
โญ๏ธ
Tom....we live in FL. My husband was diagnosed July 2018. He has Neuroendocrine PC. Recently spread to liver and now lungs. Gleason 10. We just found a new Dr in Boston. We have flown up and back 3 times in the last 5-6 weeks to see him....and this Dr has been a blessing. I will private message you the Drs. Info. He is truly wonderful. I mentioned your case.
I will message you now. ๐ค๐๐
โข in reply toGunnershome
Wow! May God Bless Gunners home with successfull treatments and years of life ๐
I'm not trying to be confrontational.... but why can't you post the Boston Doctor's info here? Posting his/her name here will not violate the law.... (Someone else may be able to use that information)....
Good Luck, Good Health and Good Humor.
j-o-h-n Thursday 10/01/2020 5:44 PM DST
Hi John....of course. I will be happy to share. I didn't mean to seem secretive....1) I wasn't sure if we were allowed to post specific Dr. info on here and 2) I wanted to share with Tom....a bit more of my husband's aggressive and unique Neuroendocrine PC case. I believe most men on here do not have Neuroendocrine and I didn't want to scare/confuse others with my husband's unique case....and 3) I'm a mom of two kids....juggling a house, taking care of husband, kids, etc.....and I'm in a million directions all the time.
But yes, the Dr. we were referred to by another Neuroendocrine PC gentleman from this group.....is Dr. Paul Mathew at Tufts Medical Center in Boston. My husband is a Gleason 10. He was diagnosed July 2018....with mets to nearby lymph nodes. We live in FL but have been to MD Anderson, Sloane Kettering and see a local oncologist as well. Lupron, zitega/predinosone worked for 14-15 months. Then it spread to the liver, rib, hip, knee, etc.. The virus hit and we were unable to travel out of state. We tried a clinical trial here in FL......it did not work....the cancer spread. Then we tried 2 rounds of chemo.....it did not work. The cancer spread yet again to the lungs. My husband is 57 and I'm 48. We are still trying to wrap our head around "how" he got such an aggressive cancer with no history in his family. Both his parents are 79 & 78 and in overall good health.
After the chemo, the Dr. here in FL....basically told us we could "try" an immunotherapy drug or call hospice/do nothing. Our kids are 15 and 12. I need my husband to fight. So, after zooming with several Drs. over the past few months.....something about Dr. Mathew.....made me feel the most at ease. He was the Dr. I felt most confident in. When we went to Dr. Mathew....my husband's case was dire/grave. His liver is very very bad. Dr. Mathew was frank.....he gave us no promises. But, we could not find a clinical trial that fit my husband's unique case. So, we are doing an unorthodox approach....a targeted therapy of sorts. So, far....my husband's liver numbers are going in the right direction. He looks and feels better. But, we are still being cautious....being "realistic". It's too soon to know for sure....but since Tom lives up in Boston.....I thought....it was worth the shot in getting an opinion with Dr. Mathew. I personally think Dr. Mathew is brilliant.
So, yes....I didn't want to "take over" Tom's post with my husband/our journey.....but life is about helping others.....if I can help one person with this terrible disease.....it would warm my heart. I hope Tom is "ok" with this long post. 
I hope others know.....we have the "mac-daddy" PC and we are not giving up yet. Keep fighting....it's a journey.
Brenda
Well Brenda.... now I feel like an idiot.... We do share doctor's names here. My Oncologist is well known here "Dr. Michael Morris at Sloan Kettering in NYC", very smart and good personality. I do hope that you weren't offended by my post but I was just trying to get a "good" doctor's name on record. Your husband is putting up a good fight and I pray he will be able to play with his/your future grandchildren. I apologize for being an idiot..... Take care and God Bless.....
Good Luck, Good Health and Good Humor.
j-o-h-n Thursday 10/01/2020 8:41 PM DST
Hi John, oh please don't apologize. I feel bad...if my original post seemed like I was hiding or unwilling to share information. I just know that NE PC is very rare and much more aggressive and did want to "scare others" into believing their PC will be so aggressive like my husband's. Please keep in touch. Knowledge is power with this disease. The more you know, learn, research and most importantly..... advocate for your own treatment.....I have found....is so important. The Drs. here in FL....gave us no hope. Now, we have hope with this Dr. in Boston. Stay well. Keep in touch. Brenda
Don't worry about taking over the post, it's all good information for anybody in a similar situation weeks or months from now (perhaps years, but at some point it will become outdated)
It seems Boston has a choice of doctors who specialize in and research neuroendocrine prostate cancer. The only downsides are that there's a spike of coronavirus in the city right now, and it's easily one of the worst cities to drive in.
I'm sorry the clinical trial didn't work for your husband, but still want to thank him for taking part in it. His participation will help advance the science of treating this disease.
Hi Brenda
Iโm 58, 2 boys 25 to 30. Diagnosed in Nov 2017. Mets on spine now growing again after being in Abiraterone for 32 months.
I have been told my cancer is aggressive. My PSA is still <o.1 as apparently my Mets to give out much PSA. Does not appear to be in my lungs or liver and my MO does not think it is Neuroendoctine PC.
I have wanted to do Lu177 but this is not available here. I think you have looked into it too. My MO is recommending chemo. Did you get it with docetaxel and carboplatin (as neuroendochrine). Did you get biopsy to determine neuroendochrine? What was PSA at diagnosis, when Abi was working, and now after Abi not working.
Sorry that chemo did not help. Did you think about going to Germany for Lu177?
All the best!!
The group loves ya Tom. Ya got to hang tough and beat this shit back where it belongs, no matter what it takes.
โข in reply to
๐ช๐
The race isn't over yet...you have endurance....fight on!!!....Tap into your inner Frank Shorter....๐
Pulling for you Tom to beat this, your blog is heartfelt, stay in motion!!!
Thatโs a truly beautiful picture of you in Vermont, Tom. Nice looking, good scenery, excellent colors. The wry smile makes it. You should blow that up and have it framed.
Tom have you looked into this:
Breast cancer drug set to transform prostate cancer treatment:
medicalxpress.com/news/2020...
"Final results from the trial showed that olaparibโa pioneering type of drug called a PARP inhibitor and the first ever cancer drug to target an inherited genetic faultโcan be used successfully to treat prostate cancers with a weakness in their ability to repair damaged DNA.
The innovative drug was more effective than the modern hormone treatments abiraterone and enzalutamide at slowing down the growth and spread of prostate cancer in patients with advanced disease."
That's certainly a possibility, but my genetic testing has not shown the BRCA mutation for which PARP inhibitors work very well. Still, my oncologist has said they can work even without the mutation. I expect to end up on either a combination of two drugs, or a brand new experimental drug, possibly in combination with another drug.
I'm sure my oncologist would try olaparib if there are no better options. He doesn't seem to be the "nothing left to try" type. It also seems I may have more input into treatment selection as we get deeper into uncharted territory.
Tom - wishing you the best and hope you have many more years. Stay positive. The mind (together with a fit body) play a huge part in this.
Thank you for your candor in your blog. I am glad to know there are other souls out there dealing with a mixture of feelings during their journey. Best wishes for some good treatment and answers.
Hi Tom. Looks like we share age, PCa and I lived most of my life in MA. SE MA (Taunton) growing up, Summers in Sandwich, College (Bridgewater) and Grad. School in Amherst, Then NE MA (Methuen)...and the last 15 years at the start of the Boston Marathon in Hopkinton. Appreciated your blog. Where are you? Wishing you well on your journey.
I'm up near the NH state line in Pepperell. I ran the Boston marathon in 2011. I probably saw some fellow runners relieving themselves on your front lawn. There's a shortage of porta potties at the start, so runners are relieving themselves everywhere near and after the start, and it's not just the guys.
Tom๏ผ you and I have similar situations, I was diagnosed in March 2019 with PCa when I was 50, treated with ADT and Zytiga, this April diagnosed with SCPC, just finished chemo in July, will have CT scan in October to find out the results.
I have read thru most of your blogs, your experience shared in the blogs is helpful and inspiring.
I hope your doctor will have new plan for you.
Please keep me posted on any news
All the best
Tom, it is always good to read your blog although the news isn't always great. I love that pic. I wish I could see Vermont in the Fall. If you don't feel like writing then just post some more Fall pics. If I can learn how to post a pic here I'll try to make you laugh. #BostonStrong
Wow. Hope you can find a way through the maze. I read your latest blog post, and I am happy to be in your audience. I wish I had answers. But I am pretty much of a know nothing. The leaves of autumn are always so beautiful. Send another picture when you're standing in the flowers of spring.
That's it..... I'm hanging up my spikes..... These guys have me beat by a mile.....
But that doesn't mean I can't post to you... Tom you're an inspirational to many of us here. I for one look forward to your blogs and this latest one brought tears in my eyes. I do hope and pray you find a cure sitting out there waiting for you. Fighting my Pca was enough for me but when I found out I had a melanoma on my neck that metastasized to my lung I really got depressed. Thank goodness a nurse at MSKcc mentioned that there was a drug that worked on lung nodules and they led me to my lung cancer oncologist who prescribed Keytruda as an immunotherapy and so far it's working. I hope that type of scenario will cure you from all your maladies....
Keep blogging.....
Sorry no humor today the guys beat me to it.....(actually they copied it from my website)...
Good Luck, Good Health and Good Humor.
j-o-h-n Thursday 10/01/2020 6:16 PM DST
โข in reply toj-o-h-n
Go keytruda.. itโs helped a friend of mine lung cancer .. ๐๐ผ
j-o-h-nโข in reply to
Wonderful news for your friend. I've been touting it many times here. Did he have any side effects? I did not... Tell him I heard that it cost $30K per injection.... (maybe b.s.) So if you know anyone else with lung cancer tell them about Keytruda.
Good Luck, Good Health and Good Humor.
j-o-h-n Saturday 10/03/2020 8:10 PM DST
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