When I was first diagnosed a year ago, the radiation oncologist said that he would not radiate me because I had retroperitoneal lymph nodes which were too close to the aorta. He said radiating the prostate alone would do no god since I have extensive lymph node involvement. So I have been on Zytiga + prednisone plus Lupron. In my one-year visit everything was perfect. Scans are clear – no Mets to the bone. Even the lymph nodes have shrunk some. PSA is undetectable and everything seems perfect. But my medical oncologist at Mayo says he now believes I should have radiation just to the prostate and he has sent me to a radiation oncologist I’m seeing next week. A year ago they said radiation to the prostate alone would do no good since I had so much lymph node involvement. Now they’re saying there is a study that is showing that radiation just of the prostate extends life expectancy. He said the results are preliminary – the study is incomplete but that my MO now recommends radiation treatment. So: what do the rest of you say about radiation just to the prostate when there is extensive Lymph note involvement? And, is there any kind of radiation treatment that is better than the other? I presume Mayo has everything
Radiate just the prostate when there ... - Advanced Prostate...
Radiate just the prostate when there is extensive lymph node involvement?
An alternative would be surgery with extended lymph node dissection. That would treat both the prostate and the lymph nodes.
My friend had external beam therapy to his pelvic lymph nodes (45 Gy in 25 sessions) with an HDR brachytherapy boost to his prostate. A subsequent Axumin scan revealed involvement of his para-aortic lymph nodes. He then had 25 Gy in 5 sessions to that para-aortic lymphnode chain with a boost dose to the affected lymph nodes. He got good local control and had no significant side effects. As it later turned out, the cancer had already spread beyond that area. But such treatment is possible.
There were hundreds of us Dr. Myers patients who got radiation treatment of pelvic lymph nodes.
We all ended up with compromised levels of Cd4 t-Cells. And apparently once they get killed off they never grow back.
So sorry to hear that. Seems odd. Please explain further how radiation compromised your t-cells and what the ramifications of that are.
Schwah
See my response to TA. If I am missing anything, let me know and I will fill you in.
The real issue is that some of those lymph nodes can be difficult to reach with surgery and easy to reach with radiation.
I think from what I learned, I would just be cautious as opposed to cavalier about treating those difficult to reach anterior pelvic lymph nodes with radiation. They are filled with t-cells. Once killed, the CD4 t-cells never grow back. And even the others, when they do grow back are permanently stunted. They new ones lose all the immune lessons the old ones pick up over the years of fighting infections. They are just never as good as the originals. But the CD4 t-cells aren't even replaced by weaker versions.
There may be more tradeoffs to electing to treat lymph nodes with radiation that are obvious at first glance. I guess you can say that for most of these cancer treatments. LOL
If you live in areas subject to fungal types of infection or in tropical or subtropical areas, losing your CD4 t-cells is a big issue. Myers also told me to stay away from live vaccines and the gulf of Mexico.
Tuberculosis and so called "Desert Fever" fungal infections in California are particularly dangerous. And apparently climate change is spreading "Desert Fever" fungal infections far beyond California.
You say radiation to lymph nodes kills T cells. If that is bad wouldn’t removing them be bad too?
The cause of the depleted cd4 levels was subject to some dispute.
If you remove a lymph node you lose only the t cells there at the time. And that happens only once.
If you radiate it, you kill those that are passing through at the time. If you do, say 40 fractions of radiation, that is a lot.
And if you are flooding the pelvis with radiation, that may be even more.
How do you know this? I haven'tread any studies that say any of that.
Myers told me.
And I have my own medical records. I have the CD4 t-cell levels of an aids patient.
This issue is fairly well known among Myers patients. You probably know more than a few of them. Ask them if they have radiation treatment of their lymph nodes and what Myers found when he tested their CD4 t-cell levels.
I had an immunologist take a look at me. She said that it looks worse than it is as the rest of my immune system is still intact and is compensating to a certain extent. But still.
My primary care Doc was fairly impressed that Myers discovered this problem. Which would be consistent with the fact you find this non-intuitive.
The cause of this was in dispute between Myers and Dattoli (the radiation oncologist who shared these patients with Myers). Myers believed it was caused by radiation treatment of the lymph nodes.
They shared maybe a thousand patients and it was a source of some friction between them as Dattoli and Myers differed as to the cause of this pattern. Myers discovered this not that long before his retirement, so maybe he didn't want to go out of his way, to do a whole bunch of work, to aggravate his working relationship with Dattoli.
Once he discovered this, I am certain he stopped recommending radiation treatment of lymph nodes.
My personal guess is that the problem was exacerbated by lots of radiation spread over many treatments. So lots of CD4 cells got exposed over a period of time.
I would guess that this adverse effect might have been diminished if fewer treatments of higher levels of SBRT radiation instead of IMRT radiation would have been used. Though then perhaps the results would have been less effective.
The treatment definitely cleaned up my lymph nodes.
Dattoli apparently never accepted that his radiation treatments were the cause. I don't know what his conjecture was as to why it occurred so regularly in patients who had radiation treatment of their lymph nodes.
Dattoli definitely keeps a heavy thumb on the radiation. So perhaps this effect might not be so pronounced in lymph node radiation treatments by more conservative SOC radiation oncologists.
It is what it is. I doubt it was caused by the Sarasota water.
As with many of Myers' conjectures, it is certainly a valid hypothesis (the workings of the immune system are still somewhat mysterious), but where is the science? If this occurred with so many patients, as he claimed (I never heard it from any other Myers patient, although I don't doubt your experience), he would certainly have been able to do an observational case-control study; i.e., "The CD4 level of irradiated patients was X, while the CD4 level of non-irradiated patients was Y, and X is significantly different from Y." If that were true, and he published it, it might lead to a clinical trial that proved or disproved it. Myers is infamous for making such unsupported conjectures.
BTW, radiation has been found to have stimulatory effects on the immune system after an initial depression -so maybe Myers didn't observe for a long enough time. in preclinical studies, extreme hypofractionation is more stimulative.
pcnrv.blogspot.com/2016/08/...
All I can say is that I ended up with cd4 levels of about 200, which I am told is the cutoff for a diagnosis of aids.
You come out of adolescence with a fixed number of them.
Radiation does kill t cells.
Most types of t-Cells will grow back if killed.
Cd4 t-Cells can't grow back if killed.
Neither radiation nor anything else can generate new or additional cd4 t-Cells. This is not controversial. It is textbook science. They can be generated only with a pre-adolescent thymus.
No one really fully understands how the immune system works. But this part has been known for ages and has been included as basic black letter science in science textbooks for ages. Cd4 t-Cells can only be produced by an adolescent and pre adolescent thymus. I think if anyone wants to contradict that, they need to show some recent studies indicating otherwise.
I can't tell you how intensely interested I would be in any evidence that it is possible to grow new cd4 t-Cells without a youthful thymus.
I don't think I am missing anything here. Could there be some other common cause. Sure.
Is there reason for some caution. Maybe so.
Ta, Is there any statement of fact in this message that you contradict???
I think you need a new textbook. Yours is totally incorrect. I know many men with HIV, and I promise you that CD4 cells do grow back.
That is so good to hear, especially from a reliable source of info.
Ta, are you aware of anything that can help, or is even alleged to help, promote the regrowth of Cd4 type of t-Cells?
There is a whole cohort of us who would be interested in that.
It's been almost 10 years and mine haven't really grown back. They are still at about the 200 level.
Maybe the thymosin alpha-1 that another member posted about recently would be a possibility: ncbi.nlm.nih.gov/pubmed/281... (you will need to use sci-hub for full text). Research is preliminary for CD4 cells, but I am not aware of anything else that could help.
Shanti, thanks.
Actually Dr. Myers thought that over the counter pepcid might help. It seemed to help a little... maybe. Though it was hard to tell.
I wonder if the Pepcid suggestion was based on the research around cimetidine, cancer, and immune stimulation? Pepcid and cimetidine are both H2 agonists, but why suggest Pepcid instead of cimetidine since cimetidine has the research?
cancer.gov/publications/dic...
ncbi.nlm.nih.gov/pubmed/163...
oncologynurseadvisor.com/ho...
lifeextension.com/magazine/...
(note: I put some links above, but not all studies published show benefit for cancer)
"Due to its non-selective inhibition of cytochrome P450 enzymes, cimetidine has numerous drug interactions. Examples of specific interactions include the following:"
1. Could that be a reason to favor pepcid?
2. You seem fairly knowledgeable. Do you have a medical background? Or is there a particular reason you have such an informed opinion on this subject?
1. I agree, Fomatidine (Pepcid) has its fair share of interactions, but not nearly as many as Cimetidine: tandfonline.com/doi/abs/10..... Depending on what other medications you were on, he may have wanted to avoid Cimetidine and took a gamble that Pepcid may have a similar effect.
2. I have a medical background, but not in cancer. Motivated to improve my husband's prognosis, I've been on a crash course. Understanding medical language and concepts has been invaluable.
I was always impressed with Dr. Myers ability to look out into complexity and find fairly straightforward paths through it.
Solving a problem while avoiding drug interactions is just like him.
And he did this about 7 years ago.
aidsmap.com/news/dec-2018/c...
Ta, thanks for the article. May I ask you to clarify two things the article says that make it unclear what a good cd4/cd8 ratio is. One place it seems like a high ratio is good and another place it seems like a 1 to 1 ratio is good.
"Having a higher CD4 cell count and a higher CD4/CD8 ratio at the time of starting treatment predicted CD4 recovery (strongly, for the former; to a certain extent, for the latter). "
"The CD4/CD8 ratio is as good a marker of the immune system as the CD4 cell count. A normal ratio ranges between 1 to 4, so the closer you get to 1, the better "
So is 1 to 1 better, or is a higher 4 to 1 better?
Ta I just read your article. I think you may be missing one nuance in what I am saying.
I am only talking about Cd4 t-Cells. Not about any of the other types of t-Cells that are fully capable of regeneration without reliance on a youthful thymus.
Nonsense about no new CD4 cells.
Your onco gave a reason for not radiating lymph nodes close to aorta. And not radiating PG because of many positive lymph nodes, and he probably thought systemic treatment would be better, so you have been on ADT + Zytiga and your Psa has gone to very low level. Undetectable here in Australia means > 0.01. But you say lymph nodes have "shrunk some" which tells me they are still there, and you say scans are clear because there no mets to be seen in bones. So how could scans be clear? But often lymph nodes are first to show up in scans, and it seems to me they are all still there, despite a low Psa because ADT +Zytiga is supressing Psa production of these mets. Hormone Treatment such as ADT etc does not cure Pca by killing many Pca cells, it mostly puts Pca cells to sleep, and slows down their growth. If you have EBRT or IMRT to PG now, it reduces the total amount Pca you still have, and even if you were successful in killing all Pca cells in PG, overall survival time may not change much because your Pca has spread.
It seems you didn't have an RP, and hence the PG remains a source of mets to keep on being generated but maybe only when there is no ADT, or when ADT stops working, and it probably will.
You may think there are no bone mets, but they may stay so small while ADT is working that they don't show up in any scans.
I had Gleason 9 at diagnosis in 2009, age 62, Psa 6, and it was found to be inoperable during attempted RP in 2010. Too much Pca outside capsule. I was given 70 Grey EBRT, within 2 year time for ADT. Psa went to nadir 0.08. I paused ADT, Psa went to 8.8 6 months later, so the treatment failed, so I went back to more ADT in 2013. Psa began to rise in 2016 as ADT failed, so I had Cosadex added and had extra 31Grey of salvation IMRT to PG, because docs though my PG was only going to cause trouble unless Pca within and around was killed.
ADT and Cosadex masked any action the extra RT had, and a year later, Psa rose again from minimum of 0.4.
But I had first PsMa Gallium 68 CT / PET scan in 2016, before the salvation RT, and that showed first 2 mets in lymph nodes near oesophagus, and these mets showed up maybe 2 years before any CT scan would have seen them. Previous CT scans showed no mets.
So I quit Cosadex, which gave only 6 months Psa suppression, and began Zytiga which gave 8 months, and successive PsMa scans just shoed more and more mets as they grew large enough to be seen. So Zytiga was stopped and with Psa at 12 I had 5 shots of Docetaxel and Psa peaked at 50. and it was deemed to have failed, because mets were still there. PsMa scan showed I might benefit with Lu177, and I began Lu177 in Nov 2018, completed 4 shots in May 2019, and I had Ztandi added after 3rd Lu177 shot. Follow-up PsMa scan in August 2019 showed bone healing going on at bone met sites and no lymph nodes could be seen. By Last November Psa dropped to 0.32. Docs all said I had a marvellous response to Lu177.
But a week ago Psa was 1.3, so Psa is now doubling in a month, so today I had two different CT scans, one of thorax and a full body scan of bones, so see what may be causing rise of Psa. There are many theories why; Xtandi could have failed, exposing my unsuppressed Psa level after Lu177 without hormone manipulation, or I have Pca that was not all killed by Lu177, and it has begun to grow again, there may be new mets, there may be mets that don't make PsMa so Lu177 didn't have any effect on them. NOBODY knows yet why Psa has begun to rise, but all this uncertainty is typical of long term Pca treatments where Psa goes up and down like a yo-yo, and its only ever all killed off when you have had no treatment for 10 years and Psa remains below 0.01, or less.
If you had a Gleason score of 9 or more, EBRT or IMRT has 90% failure rate.
Even with Gleason much lower, say 5, and you had RP, there's still a big chance an RP just won't get all the Pca that exists, and that some PG material will remain, and because that has same or similar DNA as the PG tumour that is removed, it to may become cancerous, and many men have to have a full course of 70Grey of EBRT to kill whatever Pca appears after RP. Not even this may work over time.
Brachy Therapy or BT, is the injection of maybe 100 tiny radioactive gold pellets to PG, and this type of RT uses nuclear radioactivity short half life but 160Grey can be delivered without side effects of beam RT which badly affects organs in pelvic area, such as the rectum or bowels. But 160Gy can affect the many nerves around PG and affect the urethra that is inside the PG, and so BT can have lasting side effects of total ED, incontinence and constriction of urethra and difficulty peeing at an earlier time than beam RT. I have had total of 101Grey of beam RT to PG, and it didn't kill all the Pca in PG as a doc said it would, but it didn't maim me either, and I am still fully continent. ADT + RT since 2010 has completely exterminated my sexuality, but that's not a bother because I have not had to please a wife.
You can see my full story at
turneraudio.com.au/Patrick-...
Unless an RP is successful when Psa is low, and where Gleason score is low, its very common that Pca spreads before anyone knows it has, no matter what scans are used, and we have to chase the horse well after it has bolted.
I have been fighting Pca since 2009 and mine probably began in 2004. No doc said I should have biopsy when Psa reached 2.5. Threshold for full examination with biopsy is at Psa = 5.0 here in Australia, and for me, it was way too late. I had a lot of Pca with low amount of Psa. Some men will make a higher Psa with tiny amount of Psa and several biopsies may be needed before Pca is found, and then the decision about treatment can be made, and I know men who had RP when Psa was low and Gleason was low, and they just never post here because they don't have any Pca, they are fixed forever, although they may have Ed and some incontinence.
Patrick Turner.
Patrick-Turner
Love the outline and "we have to chase the horse well after it has bolted". Without question the effort of managing this disease falls upon the guy with the help from smart docs. Hang strong....
Patrick, you are an interesting guy, thanks for the post.
Appreciate the thought and you are right. I will ask a lot of questions of the RO. I work full time and I don’t relish the idea of going daily for so many weeks. Will post my decision after I see the RO.
Exactly the basis for my initial decision to have surgery. Working full-time and 40 sessions of RT were incompatible, especially since the expected outcomes were equivalent for RP and RT.
The RO suggested RT preceded by "hormone therapy" as being both Standard of Care and with "significant survival benefits." I pushed back: how much survival benefits? "Well we don't know because the study is not completed." After my RP, the MO and RO said, "well the tumor margins were a little iffy and we think that salvage RT + ADT are Standard of Care with "significant survival benefits." How much benefits? What am I going to get in exchange for memory loss, brain fog, brittle bones, boobs, muscle loss, libido loss, depression and fatigue? The studies had been completed but they could not give me a meaningful answer. Basically, statistically an average six months. "And a few adjustments in Activities of Daily Living will take care of the side effects."
[I am getting a little long-winded here but I am passionate about this aspect of treatment.]
Basically I told my physicians -- I am also a physician -- I greatly respect what they do but they are about only one metric -- survival -- and that is fine but it in no way accounts for Quality of Life decisions which are mine to make. I suppose we agreed to disagree.
I am now 14 months post-op with non-detectable PSA. That could change; I could change my mind. It is hard to resist authority and greater expertise. It is scary, too.
I've yet to meet an oncologist who is upfront about the undesirable side effects of ADT. And it's not easy to find a really authoritative study of the life extension provided by ADT (a double-blind study) adjunct and followup treatment.
The QOL issues seem to be glossed over or simply ignored. It's all about getting another week of survival - discounting the cost to the patient in QOL to get that week.
For what it's worth, a few months after dx 7+ yrs ago, (metPC, with Gleason 9 and PSA in mid-40s,) and after a few months of Luporn treatment, I had prostate surgery along with the removal of over 30 lymph nodes. I was 54 and otherwise healthy, so I was willing to risk having the surgery. Only one of the lymph nodes was dirty. The surgery was "open" and it was a painful recovery. I was fortunate to have had very minor incontinence for a few weeks, and following that my urinary control is pretty close to 100%. A big cough or belly laugh might result in leakage of a few drops, but I almost always "catch it" in time before it gets released. I have never leaked enough that I had to change my underware. I have no idea if removal of either the lymph nodes or the prostate have helped me to be alive 7 yrs later, but I believe/think there is recent evidence indicating a benefit for those who get the prostate removed. I don't know about whether that runs true for removal of the lymph nodes.
Kill the cancer where you can - if you can reduce the cancer burden I would. Ive done 4 rounds of radiation- a couple spots I have not radiated because of their location- but addressing those with other tools. My 2c
It is beyond illogical. If you already have retroperitoneal involvement then it is too late. The prostate bed and periinguinal nodes should have been radiated after your prostatecomy. The nodes do not drain down but up. I am in same situation where after having a lousy robotic prostatectomy(if someone wants to know from who can contact me) and I though everything was fine but then several years later I read the operative note and it said that there was probably some tumor left. I then had radiation but instead of them radiating not only the prostate bed they should have also radiated the peri inguinal nodes. My take away is that you have to really question and ask at each step and think yourself if it is logical or not. I will be getting the LU-177 and I think that is what you should consider!
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