Chemo 20. Psa was up from 2 months ago at 124 to 143 last month and now 163. Scans in 2 weeks. My MO mentioned we will either use my old sample or see if Guardian 360 blood test to look for microsattelite instabilities, which could mean a possible response to Keytruda, I love that my Local is so up to date and caring to look for new treatments for me. Does anyone know of new study on microsattelite instability and Keytruda. Thanks for reading , I am not to worried about where I am, as I have been already been blessed with lot of extra time.
Dan
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Dan59
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All I know is that MSI-high and dMMR were indications that got Keytruda FDA-approval across all cancer types, even though it wasn't tested in all cancer types. It's very rare in prostate cancers, but if you have it, Keytruda may work for you.
I do like the idea of a gaurdian 360 genetic test now that it would seem I will have to move beyond jevtana, perhaps It will get me in a Clinical trial, or show me a specialized med. My MO just called to say come in for the blood draw for Guardant 360, she will send previous sample from to years ago for MSI ,as Guardant does not do that one.
It has been 2 years and lots of progression since my foundation 1 test obtained by open Surgery. I am thinking perhaps a mutation developed. If not start eating leftover xtandi.
Thanks for all your info, you are a great resource.
Those are the best sessions. Couple sessions ago I ran into an architect that does solar design and installs. The next thing you know he is out at our new place giving me an estimate
Start counting the days until you go snow skiing, give you something to do.
Bill, I am counting the days till the wife and I ,go on our fall roadtrip through the Northwest National parks this fall. Also for it to get below 85 in the daytime , so I can get back out on the bike. Meanwhile I will make the most of every day. And I will be skiing this winter.My MO said I have been a great responder to all things in the past, she says we will try everything and hope to find something that works, retry all the old meds that worked, I like her fighting spirit, and she is right in my corner, just 5 miles away. I can send a message and hear back within 2 hrs anytime Mon thru Fri,and if important 24/7. She draws information from a wide network. She would call Maya up if I asked her too.
Thank you for the kind words Snoraste! Much appreciated! I think I read it is about 10% have the non hi MSI, but there are many other mutations that have different drugs in Clinical trials. We will have a good look at my Genetics and go from there. From my list of what to do when all else fails.retry xtandi/Zytiga, try 3 mg DES with anticoagulation, some activity in oral chemo cytozan/cyclophosphamide as shown by Glode years ago in CRPC.Clinical trials for new drugs maybe BAT if still asymptomatic. Spend much time with loved ones.
Hey Dan, I'm not sure what I can offer, but I just wanted to check-in and say Hi. I'm thinking of you and sending positive vibes your way. Cheers Paul.
Thank You Paul, I did see this paper out of UCSF and what the call Eric Smalls West coast dream team , on further research on CRPC and the Genome. I think they are making a lot of progress. Eric Small IMO has been at the forefront on PCa research for decades, here is the article. ucsf.edu/news/2018/07/41116...
Best to you Paul, Keep us posted on whats going on with you please.
I think they will make huge strides in your lifetime.
Thanks Dan, I've had a bit of a rough ride lately. Unable to pee for 2 months, self-catheterising and last week I had a TURP operation which didn't work, so now I have an indwelling catheter. I'm taking lots of pain killers, which leave me a bit dazed and confused, so I'm not very effective at work right now. Anyway, life goes on. Others have it worse than me and I'll get through this phase. Thanks for the link, there is so much to read and so little time! Cheers Paul.
Paul, I am sorry to hear of those troubles, and wish you speedy recovery from turp. I wonder if dutasteride would do anything to shrink your prostate around your uretha and alleviate some of that. I think that is one indication avodart/dutasteride is indicated for, really Minimal sid effects, except you hair gets thicker, and some evidence it helps with prostate cancer. Just a thought, I have used it for 12 yrs. , and my Urinary symptoms have surely improved from carrying a pee bottle in the car on my 25 minute ride to work to now getting maybe 4 hrs at night without getting up now.
Hey Hazard, Thanks for your message. Work gives me a purpose and a reason to get up in the morning. I'm a Financial Adviser, so I'm fully aware of my insurance claim options. I've claimed on Trauma and I'm sure I could claim on my income protection, but I'd rather keep working. I could also possibly claim terminal illness, but I refuse to give in to the disease. I keep the insurance 'up my sleeve'. Cheers Paul.
Really appreciate your updates and all of your comments here. Guardant 360 will send you on another good path. Wish we could have your Dr. She sounds fantastic. Sending good vibes your way, Dan.
I really do, The only issue is a bit of lightheadedness when I stand up getting out of my car in 95 degree heat. I am now mildly anemic, but they assure me I am not yet at transfusion level. They did say I am their only Patient who made it through 8 rounds of cabitaxel after so much docetaxol, still able to go forward with treatment. But they have not used much cabitaxel here in this local clinic. How are you doing Mel?
It's truly amazing. Your body must be really strong. I can't offer you ideas on how to go forward. But as long as the Chemotherapy keeps the cancer under control and you can tolerate it well, keep going with it.
How am I doing? Well, I am okay. I am back working and meeting friends and of course I miss Paul terribly and have moments when I can't really see the point in life without him. So a little bit up and down I would say.
This week I was very disappointed when I got an email from St. Luke's Hospital in which they told me that they really appreciated my offer to give Reiki treatments to patients but that they felt it was "early days" in my bereavement and that I shouldn't do it. I don't know what people mean by that. I mean, I can't really call it "early days" because I have been grieving the time we wouldn't have for such a long time, and I can't see why they would turn such an offer down when they can even have it on a voluntary basis.
Mel, I can not imagine the pain you feel losing a love one. You were such a good caretaker for Paul. Please know we are all here for you! Early on in my disease, I had a dear older Friend who would do Reiki treatments on me from afar, It very well may have helped me. Thank You for your kind words and comments.
Hi Mel, I don't know how to just post things unless I can just do what I'm doing??? Not so good with all the to me new technology, I want you to know I also think you you often and wonder how you are doing?? It spills like to me you had a wonderful marriage, I did to, I say I did because my husband is not the same person, I so often cry when no one is looking and say out loud that I want
My husband back the way he used to be.😪 Sam was always a strong man, had his own construction company. Sam now is so thin, so weak and is having a really rough time with the new medication he is on.
Mel, I share your pain, I'm not there yet and I still have hope but I look at Sam and see him failing. He fought the fight ten years already and I'm thankful for that.i just wonder how much longer his body can withstand the side effects from all the treatment.?
I went for a mani/pedi this morning and met a nice gal sitting next to me much younger then myself. She told me she just recently lost her husband to cancer. She started to cry and so did I!! 😪
Just know I think of you and all the wonderful people on this site, my heart goes out to the people we have lost here and all of the ones still fighting the fight. If ever you need to chat please know I'm here for you.💗
My heart goes out to you. I completely understand what you are going through. Our loved ones change during their fight with this disease. And they are going through so much. And we as the ones who love them and want them to be healthy and well change too. It is such a difficult situation to be in for both the person suffering with this disease and the ones supporting them.
I know how hard it is to see the change in your husband and to see the dicline. And, yes, the time will come when the body just can't take the treatments anymore. It is good to know that because it helps you to appreciate each moment you have together but it is also very painful because you know that time is limited.
Be there for each other as much as you can, give each other beautiful memories every single day of your life together, try to stay in the moment, and if you need to have a little cry that's okay too. I don't really know what else to say to you tonight. And, yes, of course know that I am here for you if you would like to chat. If I can be of any help in this situation, I will be.
Hi Mel, .....So sorry for the late response, been really busy this past week, running to doctor appointments for Sam and myself. I had a root canal. He's had is usual at the oncologist.
Sam's test results were not that good, still a rising PSA. The oncologist had cut Sam's dosage back from three pills to two a day due to the miserable side effects When he was taking three pills. Well two pills of the targated thearpy drug did nothing, so back to three.??? I'm holding my breathe hoping Sam maybe will be better able to tolerate the drig this time.Going for a cat scan in three weeks to get a better idea if this drug did anything at all???
Sam and I live in Pa. The suburbs of Phidelphia, our next step is I'm going to make Sam an appointment at the Unoversity of Penn with a prostrate specialist. We are spoiled, we are only
Five minutes from the hospital where we have been going for ten years now. Penn hospital is in the city and not very easy to get to but i would like to get a second opinion. It seems that the hospitals out are way do all the traditional treatment, chemo, radiation, hormone treatment, Zytoga, Xtandi, Sam has done it all, surgeries to, I think now we should find a specialist.
Mel, I can't thank you enough for all your kind words, honest it meant so mush to me. It feels so good to know that there are people that care.
It's gets so lonely at times, I just don't know where to turn. Only someone like yourself know what it's like to go through this watching our loved ones fighting for there lives. Like me, it sounds like you had a wonderful husband also. I can't even imagine being with out Sam, the hand writing is on the wall, but I still have a glimmer of hope. i think we never quite get over loosing a loved one we just go on the best we can. How do we say goodbye to someone we have as for me fifty four years. We were married so young and I'm now 74 and Sam just turned 75 August 9th.
Thank you again, I'm thinking of you and I share your hurt. Take care.
Hi Dan, Chemo, Zytaga, failed my husband and after biopsy on lymph node He was not a canadate for Ketruda, he is now on a drug called cometriq, a targated thearpy drug.the side effects have been hard. Oncologiy had to reduce his intake of the drug from three pills to two a day. There are no results yet in the clincial trial as to the out come on reducing the amount of the drug intake, we will see this August appointment if by taking just two pills a day of this is still effective. Sam also has been blessed with a lot of extra time.
Good luck and best wishes to you!! I've heard such good results with Keytruda..I have a dear friend that is on Keytruda and doing really well. So many new drugs. Keep us posted
Thank You Lynn, I hope the cometriq works for him. Thanks for the tip, I will look into that drug as well. Will have more info on what to do in 2 weeks when I get Genetic testing done, going for blood draw now.
Dan I think you should change your ID to Dan89. (you'll be around).
Good Luck and Good Health.
j-o-h-n Thursday 07/26/2018 5:37 PM EDT
Keep on truckin Dan!
I wish I had something to offer as far as treatments, but you know a lot more than I do. Glad you have an MO who is in your corner and willing to continue the fight against PCa.
I do think the genetic testing is a good idea to check for somatic mutations.
I doubt I know more than you, never saw anyone delve into the research of pc as fast as you. I just read what Patrick and Tal Allen post and learn from them, as I did from others on different list and books from the past. The wife wants to move forward with the NW National park tour after another treatment or 2, that means fly to Colorado, rent a car ,Utah, Wyoming , California and Oregon ,Washington, My friend just told me he retired his Real Estate Biz , bought a 66 foot yacht and plans to offer wildlife cruises to people,from Seattle to San Juans and later Alaska, and I should come out ,so will make it happen. I agree it is a perfect time to have good Gene Mapping, so easy giving 2 vials for Guardant 360 test covered by medicare , and to have my tissue sample from 2 yrs ago sent in as well for microsattalite instabilities, a new indication for Keytruda, fairly rare, but possible, will be good to see where my Cancer has mutated to if anywhere. All the best and thanks for the kind words. good luck in your new treatment!
Hi Dan59 My wife and I have followed your posts with interest and hope. You have made a difference to us and we're sure to many others on this site. So we wish you ALL THE BEST with whatever treatment you have next.
We did read on another site that Keytruda can work well not only on certain mutations, but also if the mutation burden is high regardless of which mutations they are. One other thought came to mind that no one else seems to have mentioned, and that's Lu 177. Have you considered that? I'm sure you're aware it's available in Germany and Australia (Sydney, Brisbane, Perth). All nice cities to visit haha and it's had some good results.
Hansjd, Thank You very much for your kind words! I should get my results from recent genetic testing this week, and I will go from there. First time I did genetic testing 2 yrs ago, there was no significant mutations other than a hedghog mutation, for which there was nothing. I think my MO is hoping we can try Keytruda. If nothing else I will rechallenge with xtandi. Lu177 is also a possability, I could easily fly to Germany. Lately the heast has got me feeling sluggish, and I have been taking a siesta in the afternoon, This may be due to my low red blood cell count due to extensive chemo and radiation. I will post when I get the results of genetic testing.
Got 2 bags of fresh blood this morning, ready for another 10 rounds in the game. My long time Oncology Nurse (ON) hinted that I had an actionable result on my genetic profiling, so I said “meaning I could use a targeted med” And she just looked at me with an affirmative expression, I will know a lot more when I see MO next week.feeling good with the fresh blood.
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The Arm Saga continues...to chemo or not to chemo
