Hi, I am 67 and have been battling an aggressive PC for the last 8 years. I have gone through everything in addition to two chemos but it has not stopped my lymph node tumor growths in the abdomen and pelvic areas. My oncologist has recommended clinical trial if there is something available for my type of cancer. Has anyone gotten this far and has gone through a clinical trial?
Thanks,
Lou
Lou, We are in the same boat, except I have only done 12 cycles of docetaxol only, and I have extensive bone mets .What Trials does the Oncologist suggest? How big in the short axis are your lymph nodes? Do you have bone mets? I have had both for 11 plus years, It is my understanding that one can live a long time with Lymph node mets only. What is your psa currently. where are you located? You can search clinical trials by typing clinicaltrials.gov into Browser, and search for trials under prostate cancer metastatic. At this stage I am mainly looking at phase 3 trials that have shown some efficacy.I was looking at a trial with keytruda and radium 223, but it Mo called yesterday saying my Lymph nodes are to big in the short axis. I wish you the best.
Dan
What is meant by " in the short axis?"
Rich
they give 2 dimensions as 3cm by2 cm, 2 cm would be the short axis and 3cm the long axis
And we thought we'd never need math class! I forgot too, but I just thought of a graph, and it came back.
Joe
Hi Dan,
I have one tumor in the presacral space and rectal fossa that measures 9.3cm x 8.4cm (has grown since last CT in July). Tumor surrounding the rectum is now 12 x 8 cm. My PSA jumped from 337 to 432 in three weeks while on Jevtana. They also did a bone scan and it looks like I have a lesion in L2 in the spine, ribs and upper arm bone.
I am also looking for phase 3 trials for efficacy. Hopefully the Moffit Center in Tampa will have a specific trial for my aggressive prostate cancer.
Lou
I haven't been through any clinical trials. But I was wondering if you have had genetic testing done to see if you have a mutation which would allow targeted treatment such as BRCA 1 or BRCA 2?
Color Genomics will test for BRCA 1 and BRCA 2 for $149. Sometimes they run specials for a lower price. This month for women the test is $99. That was stated on their web site.
Rich
I did a biopsy of one of the large tumors about a month ago and it was sent to Foundation One for genetic testing since the prostate cancer mutated and I am still waiting the results.
Thanks,
Lou
That is so interesting. I don't actually know if they do genetic testing here in Ireland?
Mel.
Lou, what about proton beam radiation targeted at those lymph nodes! I recently had proton therapy with 44 sessions at prostate and 30 at lymph nodes.
With a good current scan, like Axumin, the proton plan can be built to target the nodes.
Best wishes. Never Give In.
Hi Vandy,
I have discussed with Onc and he said that due to the amounts of lymph nodes affected and the metastasis now in my bones, it would not be effective.
thanks,
Lou
How about Guardant360 liquid biopsy? Results could open the door for a PARP inhibitor, like Lynparza.
So, what does he have you doing now, Lou? Are you close to a big city, with a teaching college? I just had a ProstateNext and a Braca1/2 tests done at Penn, and it didn't cost me a dime. I would have preferred they did the Gaurdant360, but the price was right.
Joe
PS I'm also keeping an eye on the CRISPR Trial, it should be available for PCa soon enough for some of us. And CART, which is a T cell immunotherapy.
Hi Joe,
I have an appt with The Moffit Center in Tampa the end of Nov. which is the best cancer center in Florida and I assume that they will be doing all types of testing. I have not received the results from Foundation One yet regarding the results of my biopsy and genetic evaluation on my mutated prostate cancer.
Lou
Lou,
My husband is in the same situation as far as bone metastasis and affected lymph nodes in the abdomen and pelvic area. He began a clinical trial two weeks ago at Florida Cancer Specialists on Cattleman Rd in Sarasota. It is an immunotherapy drug rather than chemo or radiation. It’s an oral drug, AZD4635 combined with durvalumab. If you are interested, call Dr Manish Patel at FCS in Sarasota.
Alice
Thanks Alice I will discuss with my MO who by the way is also with Florida Cancer Specialist in Orlando.
Do you know if the clinical trial is in stage 3?
Lou
I strongly second the genetic testing suggestion, though not that company probably. See my recent post about my husband's great response to Keytruda. This is available FDA approved if you have the right genetic signature. The test is expensive but our insurance covered it, and I think Medicare does also.
Here's the article to show your doctor:
nytimes.com/2017/06/08/heal...
The probability that you have this is unfortunately low (5%) but there is some evidence that more aggressive types of prostate cancer may have 20% incidence, so it's WELL worth testing. Response rates are 40-60% if your tumor has the right genetics.
Welcome to the group, I was trying to get in a trial with Keytruda and radium, though at present it looks like I do not qualify. It is so great your husband is having such a great response,, In a study by Julie Graff at Oregon health in Portlandia, on google scholar 18% of men had near 100% response to Keytruda. Interesting that they also found Braaca after not finding it the first time, were any of these done at Foundation 1. I wish you continued response and good health, welcome to this group, and thanks for your helpful contribution
Dan
Thank you!! No, it was Caris Molecular Intelligence.
Yes, it's one thing to know that DNA can change, another to see it doing it.....
Thank you for the article. I will definitely show my Onc.
Lou
Good luck, let us know.
cspivak
I am not sure if you received my previous email but I got the genomic testing results from Foundation One and it shows that I have 12 genomic alterations. Some of them are as follows: AR amplification; COND1 amplification; EGFR A289V; Rictor amplification; COND3; CDH1 D72fs*20; FGF3; FGF4; FGF10; FGF19; MYST3; TPS3. My oncologist says that he has never seen so many alterations but the good news is that there are clinical trials for four of them and some treatment alternatives to try.
As long as there is a sliver of hope I am fighting this till the end with the help from my friends upstairs and my family. I am very positive and know that there is something that will help.
Lou
re: Pembrolizumab, brand name Keytruda.
Let me apologize for repeating myself.
Every three weeks I've been receiving a dose (injection) of Keytruda beginning 02/17/2017 for my Lung, Left Lower lobe metastatic melanoma (not related to my Pca). So far the tumor has decreased from 2.4 x 2.2 cm to 1.2 x 1.0 cm (as of scan on 04/06/2017) and then from 1.2 x 1.0 cm to 0.6 x 0.6 cm as of 07/18/2017 (my latest scan, new one coming up soon).
I asked my Melanoma Oncologist if the Keytruda would help in fighting my Pca, she said unfortunately no.
I was going to ask my Pca Oncologist the same question last week but he couldn't attend my scheduled appointment since he was away at a conference. I intend to ask him at my next appointment in January and post his response here.
BTW Ketruda cost is $30,000. per treatment (covered by my insurance).
Good Luck and Good Health.
j-o-h-n FRIDAY THE 13TH (2017) 12:13 PM EST
Hi j-o-h-n,
First off, that's the last time I type out your name like this. Secondly, it was a quiet 13th, probably for lack of a full moon.
Thirdly, if Keytruda, wouldn't have an effect on PCa, I'm sure they wouldn't be studying it. I believe if any Onc, or any doctor for that matter, who refuses to keep up to date on current events in their specialty, are not living up to the oath they took. My Med Onc thinks genetic testing for PCa, is a waste of time and money. I went another route to get it done, and I know he got the results, but he has yet to talk about it thus far.
Joe
Hello J-o-e_K-a-m-i-n-s-k-i
It's like I said (don't kill the messenger) when I asked my Melanoma Oncologist if the Keytruda would help with my Pca, she said "unfortunately no". I GUESS to prove her point my PSA went from 1.32% as of 12/13/2016
to 3.03% as of 10/04/2017.
Also I will touch base with my Pca Oncologist when I meet with him in January 2008 to discuss the effects of Keytruda on my Pca. I will keep the group posted regarding his comments.
BTW both Oncologist are affiliated with Sloan Memorial Cancer Center in New York City.
Good Luck and Good Health.
j-o-h-n Saturday 10/14/2017 12:17 PM EST
P.S. It is bad luck to fall out of a thirteenth story window on Friday.
Too weird, we were just talking, today, about a lady who jumped twice out of her attic window to kill herself. Three stories, then the attic. She had some brass ones.
j-o-e
Joe as of yet Keytruda is not approved, most of the hype is from a study By Julie graff can be found in pub med, at any rate 3 guys out of 10 had fantastic response, they are3 doing furthur studies with gene mapping to find out what it is that made them respond, of the other 10 , 3 more had stable disease, It had an effect on LYMPH, but not so much in bone for these men, other studies are with combinations they think might work such as adding radium , which they think does something to the PD1 pathway to make the keyytruda /pembro work. I remember the frustration when guys needed abirateone /zytiga and could not get it bcse had not been approved yet. have a good day and enjoy some fall weather before winter gets here.
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