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Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3428
Joined: May 2012

Just wanted to tell my friends here that the prostate biopsy came back positive.

Very minor, Stage 1. Easily treatable with radiation or surgical removal. I've got to talk to a radiation oncologist and surgeon to make that decision.  Chemo is virtually never used on prostate cancer, and is never curative for prostate cancer.

This is not a life-threatening diagnosis, so "Do not cry for me, Argentina."  Also, it is absolutely unrelated to lymphoma.

I am posting regarding this on the Prostate Board, and will not tie up space here regarding it.

I was getting tired of wellness, and needed a little drama in my life !  I am totally OK with this, so you be OK with it also.

 

Any prayers welcome,

max

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Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3428
Joined: May 2012

Today I had my annual PSA blood draw to test for prostate cancer recurrence.

All negative, it appears things are great. This marks two years clean on that front.

max

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

I'm so thrilled for you.  What a wonderful post to read.  Thank you for sharing and keep up the good work, you help and ease the minds of so many.

 

 

lindary's picture
lindary
Posts: 694
Joined: Mar 2015

Any time there are negative test results it is good. 

 

PBL
Posts: 218
Joined: Jul 2016

I'm happy for you. Keep up the good work!

PBL

paella's picture
paella
Posts: 81
Joined: Jun 2012

And may that PSA stay undetectable forever!

Paella

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3428
Joined: May 2012

Thank you Paella and everyone above.

What I mainly learned from PCa is that all cancers are so different. Being familiar with one leaves a person clueless about most others. It is crazy.

Prostate cancer is usually indolent, and stages I, II, and III are usually curable (I was Stage II).  But Stage IV never is.   It can be kept in check for years or even a decade or so with hormonal therapy, but that is it. Of course living a decade with stage IV cancer is much better than some other Stage IV cancers, where survival rates are measured in months (most brain cancers, most lung).

Treatments are so different: For early stage, surgery or radiation, two things seldom used against Lymphoma.  And chemo is seldom used against prostate, and only as a pallative against end-stage. Chemo (almost always Taxotere) is not curative of PCa, and neither is any other chemo. This took some getting used to as well.

Live and learn.... Prostate cancer is usually curable, not a death sentence usually, although about 21,000 people a year in the US die of lymphoma, compared to around 26,000 a year from prostate. But prostate is much more common, affecting 13% of all men.

Ladies, make your men get an annual PSA check beginning at age 50.   It is a lifesaver, analogus to mammography for women.  PCa usually has no symptoms, and when it does, it is often dismissed as enlarged prostate.  I was treated for enlarged prostate two years before the cancer diagnosis, and my family doc did not want my still relatively low PSA results to result in a biopsy. I went around him to a urologist who insisted on an immediate biopsy, which was positive. 

Among coworkers and friends I have known face-to-face, very few who died of a blood cancer, but a lot who have died of prostate.

max

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3428
Joined: May 2012

Sunday morning I could not stand up or walk, extreme pain in foot (none of this is cancer-related).  Worse Monday morning, went to a local Quicky-Emergency facility, and the doc determined that it is inflammed tendons on top of the foot, between the toes and end of foot. Very swollen; I rated the pain at a strong "8".  He did rule out gout or fracture.  Cause of the inflammation totally unknown, no trauma, no insect bites.

The reason I mention it here is that he is treating it with Prednisone.  Three 10mg pills, twice daily (=60mg/day).   I asked him if this could cause insomnia or agitation, and he said very unlikely.  How comperable is 60mg/daily to the dose people on R-CHOP or R-EPOCH receive ?  Just curious.   I am doing this 60mg/day for 5 days.

max

yesyes2
Posts: 592
Joined: Jul 2009

Hi Max,

Sorry about your foot.  Doctors just love to use Prednisone but it is great on inflammation.  For me a 60 mg dose is still a large doseage.  It could very well cause hunger, sleeplessness and stomach pain.  Be sure to take with food.  I would question him on the split dose.  I was told to take in early morning as the closer to evening the more likely it will affect sleep.  When I was getting RCHOP I received either 75 or 80mg for 5 days,  The usual doseage is 100mg.  When you stop at the end of 5 days expect to have a big energy crash.  

Hope this is of help, Leslie

Rocquie's picture
Rocquie
Posts: 838
Joined: Mar 2013

Hi Max, with R-CHOP I took 100 mg of prednisone daily for 5 days. I believe that is the standard dose. My dosage was given in 2 (50 mg) tablets which were unbelievably bitter. I couldn't get them swallowed fast enough. Prednisone did not cause me insomnia, but I took it first thing in the morning. It did not cause agitation because I chased it with ativan. I liked the energy it gave me and I used to joke and call it "performance enhancing drugs".  The worst thing for me was the horrible crash I had on day six. 

I hope the prednisone works quickly for you and that your inflammation is resolved quickly. 

Take care,

Rocquie

 

ShadyGuy's picture
ShadyGuy
Posts: 506
Joined: Jan 2017

you may remember some time back I had leg pain that seemed to go away with antibiotics then i had a weird painless lump in my foot. Well my toes swelled up and I got a rash on my legs. It was finally diagnosed as an infection caused by an insect bite, probably a tick, when I was in Mexico City back in January, even though the timelines don't exactly line up. Maybe multiple bites. So don't rule out a reaction to bug bite even if you don't recall being bitten. Good luck. I had prednisolone and multispectral antibiotics. Hopefully its gone.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3428
Joined: May 2012

Thanks to all who commented on Prednisone dosing. My neighbor who had severe Stage IV NHL a few years ago told me earlier today that his dose was 100 mg/daily.  So far I have cooked, cleaned the house, cleaned out the refrigirator, cleaned the bathroom ( including taking down the exhaust fan), done the dishes, cleaned the kitchen cabinets and floor (with paper towels !) and am about to vacuum.  And I've had only 1.5 day's worth .  My wife most likely will demand that I take this stuff forever.

When the swelling looks all gone, I'm flusing the remaider of this mess !

PS -- foot swelling is already much reduced.  Shady -- a spider bite was my first thought, but we could find no traces of any insect involvement, so who knows.  I'll go from cripple to Forrest Gump by tomorrow, at this rate.

max

illead's picture
illead
Posts: 856
Joined: Aug 2012

Do you know where I can get Pred on the black market?  I gotta get some for Bill. LaughingLaughingLaughing Hope you feel better soon.

Becky

po18guy
Posts: 1049
Joined: Nov 2011

Anyway, strange dosing inasmuch as it is usually given in a "hit" and then a taper. If you stop it suddenly at 60/daily, you may experience some minor depression. Benadryl/Diphenhydramine HCI will help you sleep, if you can tolerate it. Now, a drug that will both help to sleep and relieve depression/anxiety is Trazodone. A "clean drug", my hematologist prescribed it for sleep problems. You may start and stop it at will. I have been on the pred for two years, beginning at 95mg daily, tapering it until my immune system tries to kill me, then back up it goes. Currently, my immune system is annoying rather than homicidal.  

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3428
Joined: May 2012

Po or anyone,

I know Prednisone often causes fluid retention. I am on Day 2 of treatment and have gained 9 pounds, while eating nearly nothing.

My feet now look like huge sausage rolls in the meat counter, and legs are visibly heavier.  I have called doc, but they are "busy" and haven't got back to me yet.

max

po18guy
Posts: 1049
Joined: Nov 2011

Available at the drug store. Elevated feet - probably again. The socks take a lot of work to put on, but will force the fluid out of your feet. That will help take some pressure off the nerves - while exerting pressure at the same time. No one said that medicine would make sense, right? Pred is a monster let loose in the hope that it will kill something that is bothering you before it kills the rest of you. Take a new pic, as you will soon resemble me! On pred, I went from 190-ish to 227 over two years. Back down to about 200 now.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3428
Joined: May 2012

Po and all,

After 2.5 days of Prednisone misery, I "discontinued" the remainder of the 5-day treatment.

I would not have done this if the drug were part of a chemo regimen, as Prednisone is a critical, and complex, part of R-CHOP, R-EPOCH, and many other combinations.   As stated, I was taking it for tendonitis and a swollen foot -- no cancer involvement.  The GP thought it the best or only way to treat the symptoms.  But instead of reducing swelling, the feet got massively larger, the opposite of the intended effect.  So odd, how so many drugs often have the exact opposite effect of the intended one:  Many anti-depressants cause depression to intensify, for instance.  My inhaler says it can in rare cases INCREASE the need for an emergency inhaler (a different drug).

Two full days after cessation, I still feel rattled, numb, cloudy in the head. And the fluid weight is still here, despite the fact that I have been on a diuretic for years for blood pressure.   I have written before that I feel many chemo drugs would be effective in getting confessions from terror suspects.   I am now of the opinion that Prednisone would be BEST, by itself, toward this purpose.

max

ShadyGuy's picture
ShadyGuy
Posts: 506
Joined: Jan 2017

Prednisone can make any infection worse. It decreases your ability to fight infection. You should talk to your dr about testing for lyme and rocky mountain spotted fever from insect bites. Hope you get some relief soon. Also shortening a Predisone taper therapy can adversely affect joints, especially hips.

Sandy Ray's picture
Sandy Ray
Posts: 111
Joined: May 2017

Max,

So far the prednisone has been the drugged that has affected me the most. Unfortunatley  for me no big energy boost.

I become diabetic for about 8 days and if I do not want to take other meds I eat meat and low carbs. Also dropping off 100 mg cold turkey causes me to ache and run a low grade fever and sleep a lot on day 7. I also get the fluid retention but after discontinuing use it leaves quickly.

Of course took my last Prednisone today for round 5 of R CHOP and one more round to go in about 2 weeks.

Hope you get some other way to relieve the issues you are having. I feel a little schizophrenic I love that these meds are making me well. I hate taking meds! Oh well off we go.

Got a new Tenpoint Turbo GT crossbow with all the gadgets. Really would rather use my compound but the RCHOP has me a little weak to pull it back. I have not bought anything since being diagnosed in March. Well toys I mean.

My wife got me this for Fathers Day! So ready to get on with some fun stuff.

Wishing you the best Max!

Sandy Ray

lindary's picture
lindary
Posts: 694
Joined: Mar 2015

Love that prednisone. When I was getting R-CHOP I looked forward to the energy surges from the prednisone. Day 6 wasn't bad but Day 7 & 8 knocked me out. What I ended up doing was on day 6 I took a nap, even if I didn't really feel like it. I still took naps day 7 & 8 but I wasn't out cold for 4 hours or more those days. 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
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Joined: May 2012
po18guy
Posts: 1049
Joined: Nov 2011

There is evidence being gathered that the condition known as "chemo brain" might actually be a form of PTSD from the trauma of a cancer diagnosis. There is only one chemotherapy drug which is known to cross the blood-brain barrier (Methotrexate) and most cancer patients do not receive it.  So, if the chemotherapy drugs are not present in the brain, what is affecting it?

It seems reasonable that psychological trauma may indeed be the cause. A very interesting subject, as many chemo brain patients may feel that there is nothing they can do about their situation. Reports such as this tend to indicate that there may indeed be some action that would help them.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3428
Joined: May 2012

Po,

I would think that a PTSD-chemo brain link very possible. But I feel chemo brain is most likely a composite of extreme sickness, harsh chemicals, and fear all rolled up into a nighmare.   I had chemo brain pretty bad:  no alterness, poor concentration, fatigue, poor memory.  Irritability when people would get irritable at me for not communicating well.

During my month in ICU, I also had delirium for over a week, another condition related to PTSD or brain fog.  Clinical delirium is also known as ICU Psychosis, and occures due to extreme illness, massive drug application, and sensory depravation.  It also therefore occures in some torture victims.  I have observed men recently releasaed from military torture situations, and they they were clearly insane. Some recover, many do not. They are not highly valued by society or the medical community, and mostly get ignored and abandonded.   All of these conditions have to be related and share some causality.  It may be a bit morbid, but it is something I have studied and read about.  ICU Psychosis mostly is found in people who have died and recovered, or who were labelled in extremis, or "at the point of death," for long periods.

I was part of the nationwide study that approved Zoloft for PTSD; this was around 1996 or 1997. Zoloft had long before that been approved for major depression, of course.  Following my being crushed in the car accident and about a year of rehab, the intake doctor said I "more than qualified."   Flashbacks, startle reactions, recurring nightmares, fear in a car are all hallmark symptoms.  (SInce being ejected from the car, I have had three additional, major auto crashes. Most people can't pelieve I will even ride in aan automobile todAY.)  Zoloft was approved, and today is one of the most commonly perscribed PTSD drugs, but I found it of little use for PTSD or even depression.  For me, the SSRIs have never done much good.  Plus, I had major depression (formerly called "clinical depression") from my early teens, before any form of trauma or injury.

I view PTSD as more organic in causality:  I had organic brain damage from low oxygen and massive amounts of morphine thereafter.  I feel these elements are more substantial than purely psychological responses, although both are critical.  Many people in war or terrorism are not physically injured, but nonetheless get severe PTSD.

Certainly a serious cancer diagnosis, especially one in which treatement does not go well, can and should cause PTSD in at least some patients.

These factors are all inter-related. I do not see how one cause can be ferreted out from among a crowd and regarded as "the cause." The causes are many.  

This article says 33% of all patients in IUC over 3 days get ICU Psychosis.  I was there 25 days, most of the time on life support.  

https://www.medicinenet.com/script/main/art.asp?articlekey=7769 

max

po18guy
Posts: 1049
Joined: Nov 2011

...caused by chemo's effect on the marrow may, in some fashion, starve the brain(?) It is not directly caused by the chemo, unless certain metabolites from the drugs might pass the B/B barrier and do harm. The study of "chemo brain" as it is with GvHD, is in its infancy.

BTW, another clinical trial for GvHD is in the works for me. The one I coulld not enter due to my broken ribs. This one an oral pill that seems to negatively affect cells' motility - possibly leading to a breakthrough against the metatstatic process. Now, that would be huge.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3428
Joined: May 2012

Had my annual PSA blood draw to check for relapse of Prostate cancer (PCa) yesterday, thankfully negative.  Three years good.

Having PCa reinforced my awareness of how different cancers are; the verbage in PCa discussions shares almost none of the vocabulary with blood cancers.  My PCa struck about 4.5 years after the Lymphoma, and I began PCa study then, a whole new world, but I had been assisting an older friend with his PCa treatments for some time prior to thisb but he died of the disease about two years before I got it.  I had always taken him to the oncologists and did most of the speaking for him, since he was not very cognizant at that late stage.  This was very informative for me.  It is as if he taught me from the grave in a way....  Many said it was odd that after nursing him for a year as he died of PCa, I then shortly thereafter got it myself.  I value what I learned from him.

Following surgical removal of the prostate (one of the most common ways to seek first-line curative effect), if ANY PCA later shows, it is regarded as relapse.  There is then some chance of killing the micro-metastatic tumors, but Radiation Oncologists are mostly using educated guesses on where to radiate, because most PCa tumors are too small for CT or PET to detect, at least until they are grossly enlarged. Last I read, most CTs can't see a tumor under around 3-4 mm; my lung doctor told me this also when I was being tracked for a lung tumor a few years ago. That tumor was around 4 mm, and he said it just met the threshold for CT detectablilty (it later was clinically assessed as benign).  Most men who have positive biopsies of tumors still inside the gland show no reaction on PETs at all; biopsies randomly pull tissue samples from inside the gland guided by a quadrant matrix. Along these same lines, convention among urology oncologists says that for PSAs less than 10 (ten is a pretty high PSA), it is a waste of time to do any form of scanning, since CT, PET, and MRI very likely will show nothing.

Once PCa is metastatic at all, it is uncurable.  Hormonal treatments extend life for many men ten years or more at times, but very unlike Lymphoma, Stage 4 means "no cure, ever, with current medicine."

Another curosity is that chemo is NEVER curative of PCa.  It is used for pallative effect only, almost always Taxotere and Prednisone (the two most common chemos against BCa also).  Chemo against PCa is always last ditch, and usually won't prolong life for more than a year at most.  

ALL men over 50 should get an annual PSA test, which is cheap and painless.  Some authorities no longer recommend this, but they are bean counters.  My own family doctor told me to not get a biopsy based on my PSA, but I went to a urologist on my own, who said I needed one immediately, and I tested Stage II.  Get tested !  PCa also is virtually always symptomless until highly advanced, so no symptoms is no argument against testing either.

max

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