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Prognosis

jullo234
Posts: 27
Joined: Oct 2016

So here it is just three months after my partners diagnosis of prostate cancer, Ive written twice before. I appreciated the feedback in August.

His PSA was at a 11 July 2015. A bioposy wasnt done until May 2016.

Today he has Stage 4 Prostate cancer -Stage 11B ( Tic,NO,MO,G 8) Final Gleason =10

"multiple bone metastases in the spine, ribs, as well as the pelvic bones."

He is  a Vietnam Vet , wouldnt they have know to test PSA all along and keep on eye on this as he was sprayed with agent orange? Why did they do nothing and could they have done something in July 2015? The VA doctor said" its just as well it wasnt found earlier because you lived such a high quality of life until now"

( 67yrs).

He is on hormone treatment, chemo ( taxoterne), and has had an immune booster shot. Thats it.  They dont say anything about prognosis just what seems like endless chemo ( four more rounds) , 

Can someone please give me some input. Im not sure what Tic, No , Mo, G 8 means. What does prognosis look like ? is there anything that can be done ....

Thank you for your time.

J

hopeful and opt...
Posts: 2218
Joined: Apr 2009

http://csn.cancer.org/node/304258

Old Salt
Posts: 720
Joined: Aug 2014

Sorry about the diagnosis. Clearly your partner needs very aggressive treatment. The combination of hormone therapy and chemo (six rounds of taxotere) seems appropriate for starters. This will be tough on both of you, but there are various 'tricks' to make the chemo more tolerable. I hope the medical staff has given you help in that respect.

Hopefully the PSA will drop as a result of the treatment. Let's wait for that to happen before considering further approaches to control the cancer.

We, as laypeople, and with only a limited amount of medical information, can't really give a prognosis. As mentioned, let's see if the PSA does drop to very low.

In the meantime, please educate yourself and don't fail to ask further questions.

 

PS: The diagnosis/staging (T1c, N0, M0) makes no sense considering the metastases. For an explanation, here's a link:

www.cancer.net/cancer-types/prostate-cancer/stages-and-grades

jullo234
Posts: 27
Joined: Oct 2016

Thank you for responding . It's good to hear that

this is the standard protocol used. I couldn't figure out

the staging either. Maybe it was taken before the bone

scan was done. He seems to be managing the chemo 

relatively well although there has been just two treatments.

What seemed to really knock him for a loop was the immune 

booster shot . The pain through his pelvis and thighs was hard on him.

The nurse told us afterwords it's because it's forcing the marrow to grow 

so as to increase white blood cells ? Would have been nice to know somewhat

what to expect beforehand.

with appreciation ,

J

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3186
Joined: May 2012

As Old Salt noted, you will have to wait a bit to see how successful the treatments are in beating back the disease.  Many Stage 4 people here have had dramatic success with HT. We will just have to see.

But clearly he is profoundly ill.  Be aware that Taxotere is a "conventional" chemo, with many of the usual chemo side-effects.  He will be profoundly weak and tired; most likely he will lose any hair that he has. He appetite may disappear.  

The thing to do now for himn is to continue to be there for him, and hope that he can ride this out.

The doctors are probably not saying anything because they too need to see how well he responds to their best efforts.

max

jullo234
Posts: 27
Joined: Oct 2016

Thanks Max . Hes holding somewhat on to his 

hair has bought a cold cap. He is very tired and usually 

is slowing down by 2 or 3 . He did go golfing last week!

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
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Chemo tends to be "cumulative" in the weakness it causes, but I hope not for him.

Taxotere is a popular drug against metastatic PCa, breast cancer, and a few others.

For informatinal purposes, I will tell you that chemo (any form of chemo) is NOT curative of PCa. It will beat the disease back. What chance he has for cure is Radiation, although with widespread bone involvment, that ship has possibly sailed. But between chemo and HT, he may live many good years, once the disease is beaten back . I pray so.

http://chemocare.com/chemotherapy/drug-info/Taxotere.aspx

 

.

jullo234
Posts: 27
Joined: Oct 2016

The thought of the chemo as being cumalative

is depressing. I think i had read that , he has been such an active

man and full of so much zest for life I hate to see this 

suck the life force out of him . I had wanted him to follow the regimen 

of a naturopath oncologist who offered a supplement and diet regime. I have known two

other people who have down chemo and supplements with great success 

He chose not to go this route as the dr frowned upon it. It is not my decisi to 

make . I felt like I had to let go of trying to give info as it just seems to cause him 

stress ....

thanks for writing it means a lot to have people who are informed and care .

ronyG
Posts: 1
Joined: Oct 2016

I say again I feel, and am sorry for what you are going through.  Ye I must ask, As I have it too, and in a Bad way. You said you knew of two with success , who endured the procedure , I have to ask " how many do you know that it didn't work for ? " I am 63 , and it is forcing me to retire early ... my PSa was 16.96 in Sept 2016 and was 5.98 in May of 2015 .. So I ask in a real way .. 2 out of how many ?  again sorry for your situation

 

VascodaGama's picture
VascodaGama
Posts: 2932
Joined: Nov 2010

Jullo,

In your last post of Aug. 10 (under the name of jullo123), you were prepared to get a second opinion. You also informed that the radiology report ....... I have read that the cancer is in other parts of his body. I wonder if you in fact have already obtained such opinion from an oncologist out of VA affairs. Your partner needs to have a doctor he trusts. Someone that is able of looking over the cancer problem and at the same time to care on the overall health status, that can be affected by the Chemotherapy and hormonal manipulations. Drugs interact so that He needs vigilance and constant tests on lipids, heart health, liver, etc.

Unfortunately the only treatments with certain level of success for stage 4 patients are chemo, hormonal and immunotherapy. These do not provide cure but manage to control the advancement of the cancer during a long period. Surgery would only add more risks and side effects without any benefit, and Radiation may be reserved to attack spots in bone when these cause pain.
Xofigo (Alpharadin) is known to kill cancer in bone. It tackles the metastases using the path that controls osteoblast (deterioration of bone cells). It has been FDA approved to use in chemo refractory patients but it can be administered to chemo naive patients too. This is a good drug however it is reported to cause nasty side effects (needs to be checked). This drug and other newer are on trials so that you can discuss with his doctor about any opportunity of getting him involved (clinicaltrials.gov). These are safe and done free of charge. Just inquire.

Look into diets and changing habits to counter the side effects of the treatment. Here are links of other stage 4 patients for your information;

https://csn.cancer.org/node/294778

https://csn.cancer.org/node/171454

https://csn.cancer.org/node/282496

Best wishes and luck in his journey,

VGama

jullo234
Posts: 27
Joined: Oct 2016

Yes that is me . I keep messing up my password .

Surprising to me that you have taken the time to make the connection .

much appreciated ! We got him out of the VA system , he now sees

a medical oncologist. He likes him but I find him to be abrupt and he poo poos

supplements . For example I have read that Vit D is very important  to be above 30.

the naturopath oncologist said it should be 90 to 100 the dr just said that anything above 

30 was just fine . This time last year I kept asking him to have his vit d level checked 

out. It was under 30 last year ... He prefers to go with what the dr says and Im not well enough informed 

to really know the right approach. 

The info about radiation is what I was wondering about . No one has mentioned radiation .

i personally can't imagine more side effects but a part of me knows this is only the beginning .

i will look at the sites you sent me . Thank you for your input and your time .

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
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I will be somewhat blunt, Jullo, for the sake of honesty and in the hope that he gets better:

"Naturopathic medicine", at leat in the realm of fighting cancer, is another way of saying "flake" medicine, or "dream" medicine.  It may sound good in theory, and the desire to be "natural," but cancer cells are not "natural," and when a person is Stage 4, nothing in their immune system is going to turn back the disease. This is very close to universally accepted here, and IS universally accepted among doctors.

Good nutrition and healtful activities are always good for the body, and to be encouraged. But they are not curative of cancer.

While he might or might not already be terminal (that is yet to be determined), abandoning medically approved treatments for someting else will only shorten his time, not lengthen it.

Although many chemos are 'cumulative', in that they worsen side-effects during the course of use, so too do those side-effects fade away after use is ended, in most cases. Hair returns, appetite will come back (if his health otherwise allows it, and so forth).  Rarely, a side-effect will be lifelong: I have permanent neuropathy (numb hands adn feet, from nerve damage), for instance. But I'd rather have that numbness that what I would have if I'd never used the drugs, which would be death.

max

jullo234
Posts: 27
Joined: Oct 2016

Hi Max,

 These supplements are meant to support his system during chemo not in lieu of the chemo. The Dr

( who is a naturopath oncologist not just a naturopath) backed up every single supplemet with research.

In essence a " Therapeutic Nutrition Guide."

He asked for more lab tests to be run ( the Dr. where he receives chemo didnt seem to think necc. so they werent done.)

Here s the lab tests requested:

PSA and Percent Free PSA

Cellsearch Circulating Tumor Cells- an FDA approved test for monitoring metastatic prostate cancer. ( perhaps used as a baseline to measure effectiveness of chemo?) ' "CTC counts are prognosis for overall survival.."

BioCept CTC

Serum NTx - A blood test of bone turnover that can be used to monitor metastasis to the bone.

Alkaline Phosphatase, Bone Specific 

LDH- prognostic indicator for prostate cancer patients with bone metastasis.

So those were the tests  another thing the Naturopathic Doctor said ( lets call him ND ) was that the statins and heart medication 

my partner are on were very dangerous to be taking with the hormone treatment. At this moment I do not know the names of his heart medications

otherwise I would name them. How worrying is that? He recommended that he come off of these medications while on Hormone Treatment as basicallly the 

interaction could be deadly.( I recorded this session and will go back to better understand what he was saying). 

Next week when going for chemo round 3 I wonder should I bring this up to the Dr.  I was not at chemo round 2 as  he was there with his daughter.

Or do I call up his cardiologist and ask him? It s frightening to think that the interaction of medications could be lethal combination.

My partner once again beliieves what the Dr says and so goes with that information.  He told me that surely the cancer and heart Dr were conferring and this would have already been looked at. I'm not so sure.

Here are some of the supplements recommended:

Modified Citrus Pectin ( Absorbs into bloodstream and binds with harmful sticky cell surface proteins called Galectins....Harmful because they

attach to tissue and attract bloood vessels which provide nourishment for abnormal cells to grow,thrive, aannd spreadd.

Solufiber Blend - inversely associaated with ttumor cell proliferaatioin.

Cod Liver OIl "resistantance to the chrronic oxidative stress observed in the pathogenesis of prostate cancer.

Flax OIl

precursors for steroid production and hormone synthesis

Mycocomplex - 6 medicinal mushrooms

The rest of the supplements that were recommended were " designed to treat the core constitutional aspects of the body."

also others " designed to reach the organ syystem level to help strengthen weakened areas.

Really, the list goes on and on. Every single suupplement is backed up by research notations. I could go to each one on the web and try to research

but at this time I am choosing not to as my partner and his children do not want to bbe confused by other options. 

It seems that cancer brings out many well meaning folks who say have you tried this? ust yesterday I was told to look up Max Gurson(phkillscancer.com)

In which a combination of baking soda, molasses and water changes the alkaline levels(?) The man on the youtube video proclaims he had stage 4 prostate cancer and this concoction saved him.

So one can go down one rabbit hole into another. Which one is the right one? Does one just say just follow Dr's order and leave the rest out of it?

I have known two people whos cancer is in remission ( was metastastic one had testicular cancer and one had breast and then ovarian cancer). They did chemo and the naturopathic supplement route. Both are doing well today. Of course each cancer is uniquely different and so is not going to respond the same way.

Thank you for your time and input,

Julia

 

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
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Yes, they call themselves "Naturopathic Oncologists," and sign their names "ND," but these people are NOT MEDICAL DOCTORS; they do not hold medical degrees. They go to their own parallel universe of training, similiar to chiropractors.

Ask the "doctor" if he can write a perscription for you  -- for anything, and see what he says.

I can show you YouTube videos of people who fly to Venus every night, or whose parents were aliens, from out past Pluto.

max

 

jullo234
Posts: 27
Joined: Oct 2016

I see you have a strong opinion about this. I dont really know enough to have an opinion. Im sure I havent dont an iota of the reading you have done.

All I know is that when I look at Tom I see someone who was once as fit as a fiddle (two months ago,) going to the gym , biking and swimming. Doing more than most can do in a day. After two round of chemo he looks like a shrivelled up old man. Doctors sure as hell didnt catch the cancer then through whatever the hell testing theyre supposed to do . Now how does chemo catch it when its raging through his body. Who does have the answers?

hopeful and opt...
Posts: 2218
Joined: Apr 2009

A medical oncologist is extremely qualified; probably the smartest of all the doctors that treat. Tom is in good hands. The medical oncologist knows what he is doing.

I looked at the list that was given to you; most of these procedures are out dated or  based on Tom's diagnosis, unnecessary .

coleadams
Posts: 7
Joined: Mar 2018

GOOD HANDS, MY  AZZZZ!!  PROBLEM WITH THESE ONCO'S IS THAT THERE IS NO ACCOUNTABLILITY, IF PATIENT DIES OR SUFFERS, ETC, PATIENT STILL PAYS, NO GAIN, NO PAY, SHOULD BE THE MODUS OPERANDI, THEN YOU WILL SEE PROGRESS..

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

My cousin called me yesterday. Her brother, who was diagnosed with cancer three weeks before, covering his entire abdominal cavity, had died. After three weeks.

A dear friend at church about two years ago had a mamo and it found Metastatic, Stage IV breast cancer. An aggressive variety known as "Triple Negative."  I looked up the prognosis, and Five Year Survival rates were around 10% .  She began surgery, chemo, everything.  It was not working very well, and she found a site online, a naturopathologist, who said he could cure any cancer.  She told her oncologist she was switiching over. He advised against, said the chemo might give her a year or more, but she made the choice for the "guaranteed' natural  "cure."  She died a few weeks after the chemo was turned off.....

I have had two close friends die of PCa in the last ten years. The most recent one I basically took care of, since his family all lived out of state. I l learned a lot from going into his appointments with him, and he had tasked me with keeping his meds and what the doctors told him straight (his memory was gone by that point). His PSA whent over 1,000 at times.  Neither friend could be saved.

Your husband's situation is dire. It is ashamed that he was not diagnosed sooner, for whatever reason.  I am profoundly sorry about his situation.  He might be terminal; maybe soon, maybe not.  As has been discussed here, other writers here have come back from situations about as bad as his.   But there are hopeless cases, which is why PCa kills 30,000 men in America annually, I guess.

But what hope does exist exists within medical sciece, in my optinion, and in the opinion of medical doctors.  I hahve been around a lot of loved ones when they were told  "There is nothing we can do."  Oncology definitly has limits. Any human activity has limits.

Bless the both of you with whatever you choose to do,

max

mikedayton62
Posts: 22
Joined: Sep 2016

I think getting him out of the VA system was a very good move. I've heard many horror stories from VA patients. This is anecdotal, but my father had a knee replacement done at a VA hospital at age 73. He began suffering from hypoxia after the surgery, so they put him on oxygen. His oxygen levels were fine while on supplemental oxygen, but they were not able to stabilize it without it.They sent him home two days later anyway, WITHOUT OXYGEN. He had a heart attack and died eight hours after being released from the VA hospital. Based on my mother's description of his behavior that evening, it was pretty clear that the hypoxia had returned. The autopsy did not find any apparent cause for the heart attack.

Admittedly, he contributed heavily to his own death by being a lifelong cigarette smoker, and he had had a first heart attack 17 years earlier, but they should have known better than to release him without oxygen. My mother ultimately received a settlement from them.

I have seen a couple of horror stories at the YANA website (yananow.org) as well. I am a veteran but will never go to a VA hospital for any kind of treatment.

jullo234
Posts: 27
Joined: Oct 2016

I'm sorry to hear about your dad !

In my partners situation the Doctor who saw the PSA was over 15 said,

" do you really want me to stick my big hand up 

your ---" .   Instead of  doing a standard DRE that is what he said .( crass but true ).

He basically told him not to worry about it that a lot of PSA s were high in men

that led to unecessary surgeries . Finally more than 6

months later he did a biopsy which showed almost all cores

positive for cancer . 

So I lost faith in the VA some time ago ..

 

 

VascodaGama's picture
VascodaGama
Posts: 2932
Joined: Nov 2010

Jullo,

You seem upset for your husband's preference on his doctor's opinion but which oncologist you think to be correct in regards to the best level of Vitamin D?

The argument may be just a misunderstanding over the units in discussion. Vitamin D levels in blood is typically measured in ng/ml or nmol/L, therefore, one must tell which unit is used to avoid errors. For instance the level of 30 ng/ml equals 90 nmol/L.
In such regards, the "90" comment from the naturopath oncologist could be the "anything above 30" comment from his oncologist, if the former is using 90 nmol/L against the latter 30 ng/ml.

In any case, I agree with you that your husband should be careful with vitamin D levels in the blood because both therapies (chemo and hormonal) will deteriorate his bone health, already affected by the presence of cancer. Old fellas in particular (I am 67 yo too) are at risk for lack of vitD as the skin (under the sun) do not produce the stuff as much as at young age. Of course he can try getting the vitamin D through diets and particular foods or via supplements. I read before that one pill of 1000 IU (25 mcg) per day increases vitamin D blood levels of 10 ng/ml, after 2 to 3 months of daily intake.

However, vitamin D is not the only requirement your partner will need to feel improvements. I recommend him to have a DEXA scan to check the bone health. He may need to add to the treatment a sort of bisphosphanates to correct bone loss. Typical in stage 4 PCa patients are the drugs; Prolia (denosumab) or Zometa (zoledronic acid). Please research about this matter in the net for details and discuss with the oncologist. Here are reading materials;

https://www.nice.org.uk/guidance/ta265?unlid=7373847220162924913

Both of you are stressed with the situation so that you need to work together listen to both opinions fairly. In the end, PCa becomes an illness of the couple.

Best wishes for improvements,

VG

jullo234
Posts: 27
Joined: Oct 2016

I will wait to hear from you . Thank U.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
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Why does this keep happening ? It aint right.  Your posts have always been the most informative and helpful written here.  I am not encountering this nonesense.

You have never written a word here, ever, that any sane or reasonable person could take any offense at.

max

jullo234
Posts: 27
Joined: Oct 2016

Why would some ones input be under review ?

CSN_Simone's picture
CSN_Simone
Posts: 62
Joined: Nov 2013

Hi guys,

Vasco himself is never flagged or under review. The upgrades we put in on the site have tougher spam guidelines and some posts automatically get pulled for review by us prior to posting. From what we have seen, especially long posts or ones with multiple links tend to flag the system to pull the posts. We are working on a fix for this, but until that point, please know that no one member is being targeted.

I apologize for the inconveninece. 

Simone

CSN Support Team

hopeful and opt...
Posts: 2218
Joined: Apr 2009

Thanks for doing your job, and keeping the forums going. We understand.

jullo234
Posts: 27
Joined: Oct 2016

Apologies in advance - how do I single space my text ?

I thought all Vit D was measured the same ....

Im sure there are much bigger fish to fry than vit d . 

I wonder if the dr was going to mention DEXA scan at next appt.

I will research the info you sent me before next wed . So far

they haven't mentioned anything .. 

Yoir help and others is much appreciated !

J

VascodaGama's picture
VascodaGama
Posts: 2932
Joined: Nov 2010

Simone,

Please note that I appreciate very much your efforts to keep this forum running, and I am sorry if we use you to transmit our feelings to CSN administrators. In the end, the system glitch may be an error of the IT engineer, but I wonder why CSN decided to incorporate such feature of censorship in the discussion boards. Spam is a matter in the mailing facility.

In fact it was the freedom provided by the forum to members to exchange opinions, recommendations and experiences (at will) that attracted me to subscribe to CSN, becoming a member and a lay advocate of prostate cancer affairs. Sometimes I spend hours of investigation just to provide a fair answer/comment to a member inquiry. I find that those links, internet site addresses and list of reading materials are important tools to all of us. Eliminating or restricting such a possibility in the discussions would be a tremendous lost of this forum.

Censorship or restraints in the information we exchange here is a very negative principle. I think that the system was fine before by allowing members to flag posts judged to be malicious, linked to commercials or due to improper behaviour of the writer, etc, alarming the administrator for his review and shred of the post at his will. This feature has worked nicely since 2010.

Regarding the sotware glitch, it may help to inform the IT engineer that the "Emotions" feature of the forum seems to be suspended. These emotions were incorporated in the posts as links from a separate site which address is none existent anymore. Instead of the emotion we now see the internet error.
Other comments regarding the software I have gathered from members are the missing "spell-check dictionary" in the writing pad of the site, and the search feature of individual posts by each member in the "my CSN space".

Sincerely,

VGama

Old Salt
Posts: 720
Joined: Aug 2014

I started a new topic on problems associated with the software.

Apologies to Jullo!

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
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Great - such a discussion is much needed at CSN Dicussion Boards.

max

VascodaGama's picture
VascodaGama
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Julia (beautiful name)

I read with interest your cross discussion with Max and Hopeful on supplements, and I think that even if the recommendations from the naturopath are supported with references and seem to be good, you should follow the oncologist's protocol, exactly as you say; to avoid any interaction of drugs. Supplements or certain foods can go both ways; the good path or the worse. One needs to be careful and take them under vigilance along the prime treatment scheduling. PCa medical oncologists are trained in the interchange of drugs/supplements, their reaction and include in the protocol a schedule thinking in future consequences and care.
Your partner can inquire about the supplements and request for added tests which I think it wouldn't be against the oncologist's policy. He can even do the tests himself, as these wouldn't put into jeopardy the treatment. But are they all really necessary?

Regarding holistic therapies you describe above, you do understand that cancer patients are constantly approached by people recommending sort of cures, particularly to those in very advanced stage (not Tom situation yet). We are high proponents for their "bread-and-butter" machine. Supplements aiming the cancer "department" belong to a business constantly flourishing and growing. In any case this is not new, and if some of the claimed stuff managed cure it would be known worldwide, not kept as a secret.

Surely some guys believe in holistic ways of therapy and try most of the stuff. Nobody is against it, but only few recommend it. I recall back in 2001 when I discussed with a famous Chinese oncologist (I was experiencing recurrence) about the infamous PC-SPES. It was a marvel pill for PCa patients at the time but soon it was found to incorporate in its contents hormonal substances (drugs). A fake pill. The supplier closed the business and declared bankruptcy but the drug changed name and is still sold on the supplements market. You can read on the matter in this National Cancer Institute link;

https://www.cancer.gov/about-cancer/treatment/cam/hp/pc-spes-pdq

I guess you are having trouble in being heard by your partner and his children. You need to find a away to seat down and communicate all together. His degradation is evident but that is what chemo does. Later, after the treatment he recovers to a normalcy status (not 100% as previous). However, if vital signs become at risk while in treatment, he can stop the therapy in the middle. Be careful with any anemia symptom.

Best wishes and peace of mind.

VG

A note on posting; I think you should continue the thread posting at the end not inbetween. It is a better way for those following your story and providing you with important opinions.

jullo234
Posts: 27
Joined: Oct 2016

Thank you VG. At this point I think I can be most helpful in just being supportive. Ive stopped searching for other answers or a better cure.  Tom has chosen his route and is following what the doctor says. He has now had three rounds of chemo, with that come the hormone treatment, and a " bone shot." Im confused what the bone shot does -whether it is to actually strengthen the bone or whether it is to keep his white blood cell count from going to low. He has his fourth round of chemo on the 9th. This visit will be with the doctor so I will query about the DEXA scan. 

Last week he was told that his PSA level has dropped down into the 20's.  Is this always what happened after taxotere and hormone shots? Do some peoples levels go up and others down? 

Most of all I admire his positive attitude. He says every day is different with chemo and he doesnt know what to expect from it. In time I will investigate why nothing was done when his PSA levels went so high and he had been in Vietnam and sprayed with Agent Orange. If I can find a site in a quick search that says the two are linked - aggressive prostate cancer and agent orange- how can they have let this go on for so long.  I need to get an answer on that one. 

As always thank you for your time,

Julia

 

 

 

VascodaGama's picture
VascodaGama
Posts: 2932
Joined: Nov 2010

Julia,

This is a great post and great update. You seem more composed. I hope things go smooth with Tom till the end.
The PSA is now half from the 41 you told us in July. This decrease of the PSA (now 20 ng/ml) means that the cancer is hormone dependent. The shot stopped the production of testosterone so that the cancer became indolent producing lesser serum. The chemo will kill the cells destroying their DNA. It takes longer to verify the effect but both treatments will drive that PSA to much lower levels.

Cancerous cells that for whatever reason are not hormonal dependent do not receive the same blow. Patients see improvements latter from the action of the chemo. Tom is fortunate and may expect longer periods of control.

Several guys under VA (similar status of Tom) have posted here before regarding military claims. The following link is from the US Department of Veterans Affairs in regards to Prostate Cancer and Agent Orange. You may read for details;

http://www.publichealth.va.gov/exposures/agentorange/conditions/prostate_cancer.asp

Best wishes for continuing good results.

VG

jullo234
Posts: 27
Joined: Oct 2016

VG,

I didnt realize I wasnt composed in previous posts :~) ! I still believe in the Naturopathic route but I have let go of pursuing that course as it is not Toms wish. 

The VA  took so long to take any kind of action. I have a friend who had his prosate out when cancer was detected at4.2 PSA level! ( not in the VA system)He says he has had great success with the robotic surgery. If his PSA level was 11 or 12 in July 2015 I dont believe they should have waited until May 2016 to do a bioposy. Some may say theres no point dwelling in the past but I believe that someone dropped the ball. I think he is going to have three more rounds of chemo but waiting to see what the bone scan shows in Nov. If Im to understand you correctly you re sayingg that for now the cancer is "controlled." I didnt really understand what you meant when you said " patients see improvements later from the action of the chemo." Does that mean the hormone treatment is effectively keeping it under control and later the chemo will do the same? One day at a time...

 

 

Rakendra's picture
Rakendra
Posts: 198
Joined: Apr 2013

My suggestion is to youtube Hydrogen Peroxide for cancer.  This will not get any support on this board.  For what it is worth,  I, too, was diagnosed with "multiple, widespread matastic disease."  Psa was 300.  that was 41 months ago, so some do survive. I used naturopathic treatment, orchiectomy, and mostly spritual work.  I did not know about hydrogen peroxide at that time.  There is always hope.  My case was supposed to be hopeless as well.  Good Luck.  

Love, Swami Rakendra

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3186
Joined: May 2012

The first sentence of the document Vasco shared is key, as I understand VA policy:

A serviceman who was in Vietnam and exposed to Agent Orange does not have to prove a causal link to PCa to automatically receive free medical care for the disease within the VA system.  This gives many men in the  US treatment who otherwise would not have health care.  The relative quality of that care remains subject to discussion in many quarters, but as I might have written before, all of the men I've known in the VA System were outsourced to civilian doctors anyway.

I cannot answer the specifics of your question of Oct 29 to VG, but do know that both chemo and HT are used toward pallatative effect against PCa, so in the most general sense, both are working toward tumor shrinkage and a lowering of PSA.  I had a friend who had a PSA of over 1,000 when he began these a few years ago; the drugs beat the disease back to a level of around 150 for some time, or about a 90% reduction. But his case was one of the worst I've ever heard of, and by that time the disease had essentially ravaged his body.  Others here have had serious Stage 4 disease and lived a decade or more.

As you noted, it is one day at a time, one PSA result at a  time. I wish you both the best results possible,

max

VascodaGama's picture
VascodaGama
Posts: 2932
Joined: Nov 2010

Julia,

Nobody has told you to give up with the "naturopathic route". You follow what you believe. My reference was in regards to your confusion and many inquires posted when confronting the situation. You are more experienced now, gained acknowledge on the facts and may feel better as the treatment advances and produces results.

Supplements are very useful to balance when something is lacking and we cannot get it quickly from foods. Naturopathic medications to treat prostate cancer are not as effective as those in today's clinical use. They may "brush" the wound but do not treat the problem. I have investigated since 2001 about the benefits from the "famous" products and till today none ever found cure or gain better benefits than those "adapted" from clinical trials and later approved for use by the medical community. In fact many of those products recommended by naturopathic experts are substances included in the compounds of the traditional medicines but sold at higher prices (much more expensive).

To understand how a drug works in a treatment for prostate cancer, one must understand the chemistry involved and the "techniques" of the therapy. Hormonal treatment (HT) is sort of a combine series of manipulations in our endocrine system and "manufacturing" of androgens. It does not attack cancerous cells directly. PCa survives on androgens so that the HT technique is to deprive the cancer from getting the stuff/androgens. Orchiectomy is the first "method" in use to stop production of testosterone (lowering the volume of androgens in circulation). The shot Tom is taking is working at the pituitary to stop this from sending down to the testis "orders" of testosterone production. The stoppage causes hypogonadism (chemical castration) so that PCa cells without "food" go indolent.

Testosterone represents about 90% of the androgens in circulation in the body. The rest of the androgens are produced in the adrenal glands and thyroid. One could dissect them too but depriving other androgen dependent systems in the body would lead to grave consequences. Balance is needed. Physicians therefore try blocking these "extra" androgens via other manipulations done at different levels. For instance, antiandrogen medications (many of the products in naturopathic selves) manage to "get stacked/plugged" in cell's mouths/androgen receptors (AR) prohibiting the cancer from getting the real stuff. Still some other blockers work in the systems in charge of metabolizing the cholesterol into androgens, limiting these to be put in circulation.

In that regard, androgen dependent PCa can be controlled longer by the several levels of blockades, before it becomes refractory. There are many HT drugs in the so called "second-line" HT that can take the place of those not working effectively. The mechanism allows long periods of control. I am hopeful that HT allows me 20 years before starting chemo.

Chemo therapy works differently. This attacks the chemistry in cells' DNA (similarly to RT), therefore, it causes apoptosis during the cells life cycle that could last six months to complete. The biochemical event lead to characteristic cell changes and its death. Doubling does not occur. However, chemo works indiscriminately attacking other types of cells too. Some of these belong in the scope of the therapy (such as those metabolizing cholesterol to produce androgens), which action assures a bigger blow to the cancer and more effective treatment outcome.

The problem with chemo is that it also "kills" cells that should not be part of the treatment. The chemo medication is therefore studied and dosed to cause the lesser effects to other cells. This fact lowers the efficacy of the chemo when killing prostate cancer. It turns the drugs palliative, other wise these would kill whole our living blocks and we would die.

The double blow (HT plus Chemo) will prolong life but it will cause nasty side effects. Some patients experience mild situations. Our "homework" is to find ways for controlling the side effects via particular diets, change in life attics, fitness programs and supplements that do not interact with the medications of the therapy. Antioxidants are Bad in chemo therapies as it may try to protect/revive cancerous cells that should die. Much effort should be exercised in the decision on preventive treatments to counter the side effects and possible illnesses arising from the prime treatment. Heart problems, bone loss, diabetes, etc, are at high risk for occurrence. The oncologist must be a specialist in drugs administration and very knowledgeable in their limitations and interaction. Nothing should be administered that would prohibit or affect a future treatment for expected occurrences. For instance, anemia is dangerous and kills many PCa patients receiving powerful medication. The immune shot of Tom's protocol may be to avoid such case. Lipids and other particular tests should be planned in the overall care.

The senior survivor Rakendra above is a model to follow in the fight against PCa. He is always positive and confronts the problem as a reason of etre. His Karma. He has engaged in practices that many here would be against. He proved that steroids can be taken carefully to improve the quality of life in spite of possible being igniting the indolent cancer. He is trying now Hydrogen Peroxide which I see it as a sort of "cleaning" product. It is used in the prevention of tooth decay and as a home remedy. I doubt its benefits in the treatment of PCa. This you tube link conforms my thoughts on the matter;

https://www.youtube.com/watch?v=Mb0kFCijvg8

 

Best wishes,

VGama

jullo234
Posts: 27
Joined: Oct 2016

VGama ,

Thank you so much for taking the time to explain what I know little about. I wonder if there are questions I should be asking the doctor next week such as is he doing tests to prevent anemia from occurring..  We will find out soon if he will have four rounds of chemo or six. His appeptite has waned and the only food he seems to like is chicken soup. So I guess chicken soup it will be. He didn't have extra weight on him to begin with so more weight loss needs to be avoided.

I wonder what impact these drugs are having on his heart . He had a heart attack in his late 30's and is on a few heart medications. I think I will query with the Dr about that .For example do the oncologiat and cardiologist converse about his case? The naturopath oncologist said the heart medications he is on are a dangerous combination to be taking with the HT and chemo.  I'm sure exactly why but I could get the information.

I will read through your post again in order to better understand it.  When you said no antioxidants , specifically what do you mean by this ? So very thoughtful of you to take such time in helping those tha are less informed.

Thankyou,

Julia

 

 

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3186
Joined: May 2012

Jullo,

A few chemo drugs potentially have cardiac side-effects. The most famous of these is Adriamycin (also known as Doxorubicin; Rubex), which is not given against PCa, that I have ever heard of at least.  Taxotere (the main PCa chemo) does not have heart damage as a known or routine side-effect.

ALL medical oncologists I've ever met or read about are also board certified in internal medicine, and these things are reviewed and flagged for interactions, but DO ASK.  The link to Taxotere in the post below gives as a warning to not take Herbal Supplements, or at least to clear them with the oncologst.

ALL chemos stress the body nonetheless.  Most, if not all, clinics planning to administer chemo test the patient for cardiac issues, at least an EKG or more, to determne if the patient is well enough to withstand chemo. Not every person is well enough. The Institute where I received care required that every patient undergo a baseline EKG and baseline Lung function test.

max 

VascodaGama's picture
VascodaGama
Posts: 2932
Joined: Nov 2010

Julia,

Antioxidants are beneficial to all cells including the cancerous ones. We need to maintain a "poisonous environment" to those PCa cells suffering the blow of the chemo but not yet dead. Any action that could "revive" or "revitalize" these while on their life cycle will jeopardy in part the benefit of the chemo. Antioxidants are stopped while on treatment and resumed later. Maybe his oncologist will not comment on this.

Chicken soup is good. Lol

Best

VG

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3186
Joined: May 2012

At the Lymphoma Board over the last few years antioxidants have been a popular discussion.

The consensus, and most studies, agree: Discontinue them while on chemo, for the reasons Vasco mentioned. This may seem counterintuitive, but chemo is posion, "cytotoxic" -- literally "tumor-killing."

A trivia point that illuminates this is that the first-ever chemo agent was developed during World War II (in secret).  Doctors had observed somehow or other that exposure to mustard gas, a blister agent, caused blood chemistry changes that would likely allow leukemia and lymphoma patients to live longer.  So, under controlled application, Mustargen became the world's first chemo drug.  It is still in common use today against leukemia and lymphoma. 

It is a vesicant, blister agent, like numerous other chemos, and giving it is highly controlled.  I received two vesicant drugs, and they had to be administered via push-pull cylinder, they could not be given via an IV drip.  I asked the RN why, and he said, "If this stuff spills, we have to set up a buffer area, and call DHEC." 

Bad stuff, against a bad disease. But very effective, and has saved countless lives.

max

Nitrogen Mustard as used today:  http://chemocare.com/chemotherapy/drug-info/Mustargen.aspx

 History of development, first by scientists at Yale. Read especially the second full paragraph:  https://en.wikipedia.org/wiki/Nitrogen_mustard

Mustargen is not given against prostate cancer. Taxotere, the most common PCa chemo, is not a vesicant, but is extremely harsh long-term or in large doses.

Taxotere is also one of the most common chemos agains breast cancer:  http://chemocare.com/chemotherapy/drug-info/Taxotere.aspx

max

jullo234
Posts: 27
Joined: Oct 2016

Thank you VG , Max and others for your feedback. On Wed Tom goes for fourth round of chemo , hormone , and Xgeva. There is a possibility that he will need 6 rounds of chemo and not 4. I believe that after this round there will be a bone scan to see how effective the treatment has been. My question to you is , do you know what I should be asking the doctor on Wed? This is the first time in about 6 weeks that he will be seeing the Dr and I don't want to miss an opportunity to ask questions that could be helpful. Obviously the chemo has taken a toll but Tom continues to be up for all of the morning and then rests in the Aftn. He keeps himself busy with projects and maintains a positive frame of mind ...

Julia 

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3186
Joined: May 2012

He has not been face-to-face with the oncologist in six weeks ? This is poor patient care.  Any doctor treating any patient should be available for consultation within a few days of being asked.

I would tell him I wanted a direct update at least once every few weeks.

Some centers use Nurse Practicioners or Physician's Assistants for direct patient interface. These are usually as good as seeing the doctor imself. My friend who died in 2013 of PCa saw only his NP (with me present) for months at a time, so any question you would ask of a doctor, you could just as well ask an NP or PA, if you are seeing such people during his treatments.

I would ask him: are the combination drugs working well ?  They ALWAYS work "some."   MY friend's PSA went from 1,000 to 200 on Taxotere: that was "working," but a man with a PSA of 200 is not doing "well," by any defiinition.   Do not accept a "yes" or "no" answer; make him elaborate.  

Some men in his basic situation live a year, others live 15 or 20 years.  Which way is he trending ?   Some of this will be judgement and guessing, even by the best doctors, but it will give you somehing for the moment.  No guarantees or warranties, but something to lean on for the moment.  Remember: One day at a time.

Two things are very positive: They are finally giving him aggressive treatments, and he is feeling well.

I hope you get good news Wednesday and thereafter,

max

jullo234
Posts: 27
Joined: Oct 2016

Perhaps the 4th round could be called Chemohell. Up until Wed he was managing quite well with the ability to go out and do things most mornings into early Aftn . Now his appetite is gone and as he lifts the spoon to his mouth he looks off into the distance as if in some other world. It takes effort to get from the sofa to his bed. Perhaps as time goes by it will get better . The Dr. Has stated 6 rounds as clinical trials show 6 as being the most effective. The last treatment being just before Chriatmas.  I did ask the DR if the combination treatments were working well. He reiterated that yes they were because his PSA is now down to around 14 . This is the only measure they use until the 6 treatments are completed. After that there will be a Catscan . Then what ? After all this chemo and a lowered PSA does one go back to living a somewhat normal life ? He will be on hormone treatment for the rest of his life. How long does the PSA stay down and if his cancer is only contained how long before it becomes "uncontained." Is this something the catscan shows? Obviously it must be different for each man.

Best to you all,

julia 

 

 

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3186
Joined: May 2012

Jullo,

The pending CT will give a static picture of where his tumors are at that moment. Compared to previous scans, that will show how he is trending.

What he will do afterward on HT -- you are correct: "Every man is different."

Some will remain near zero PSA for a long time, even years or a decade or more.  Others will have less success with HT.  Two friends on HT were the latter, and had little successs, and died rapidly (under a year after ending Taxotere).

But many writers here have lived a decade or longer in the same scenario. I will say that his very low PSA curerently has to be a good sign. One friend on chemo never got his PSA below 200, after having been over 1,000.  So it is all relative.

His reaction to chemo that you describe is typical, normal.  I never did chemo for PCa, and was on a different set of five chemo drugs for six months, but there are some side effects that are almost universal for high dose chemos:  Extreme weakness, loss of appetite, and a dozen or more other things that some people just get, and some do not.

After about two months of treatment I slept 15 to 17 hours per day.  My apetite varied a little, but for about two months I mostly just took breakfast drinks and Ensure, no solid food, but I would eat something light like perhaps soup on some days.  Food fetishes (loving only one food, hating everything else) are common, and one of the only thngs I did eat was french fries.  I had a friend who had lymphoma as a youth 30 years ago, and he would not eat anything but pot pie for four months.  Whatever he will eat, give hiim: If he will eat only Hershey bars, give him that, and so forth. He needs calories and whatever energry there is in whatever he will eat. A neighbor, oly in his 30s, did chemo for lymphoma the same time I did. He went from around 300 to around 140...unrecognizable. He did not get out of  bed AT ALL  for months, except to be carried to the infusion center for treatment. WHen I say "carried," I mean it: His room mate was a weight lifter, and had to carry him to the car.  It can be bad, but that guy today, for six years now, is well.

He mightt be receiving Prednisone, a steroid, that boosts energy and appetite in most patients. I was never on Prednisone, but if he is not on it, you might ask the doctor about it.

I have known many guys who entered hell on one side under chemo, and come out the other side months later. Some do not make it to the Exit.  Plus, chemo is not curative for PCa,it is to beat the disease way back so that HT will work better later on.

He (very likely) will be very weak, weaker later than he has been so far.  Expect it.

I hope he has 15 years after this rather than 1 year. Both are possibilities.  I know this is hell for you as well, agonizing.

max

LvGuy1
Posts: 54
Joined: Oct 2016

I am sorry that your partner got such bad care with the VA reguarding the PSA score. I was just recently confirmed with prostate cancer also thru the VA. My primary Dr here in Las Vegas monitered my PSA levels and then when it jumped he sent me directly to Urology for a biopsy. The first one in 2009 came up negative and then just a few months ago when my PSA raised again I got another one and they found the cancer. They gave me the option to go to Loma Linda in Ca or go outside the VA, I chose going out of system. I am one of the Lucky ones in a way as i have a very good PCP who understands and takes the time to actually read the tests and talk to me. and some of the VA DRs dont take the time with patients as they have so many. psa scores are just a guideline for further treatment as there are other reasons why a PSA is high. But with your partner and Agent Orange and rising PSA the pcp should have gotten him to urology earlier, but hindsight is 20/20. I really do wish the best for you two and your partner gets better NEVER give up even when it gets bad. You might also want to talk to the Patient Advocate and see if they have a pcp that knows more about agent orange, dont know if it will help but worth a try.  

jullo234
Posts: 27
Joined: Oct 2016

Thank You LvGuy1 . We got him out of the VA system in Sept. The VA is paying 100 % of his medical bills at another facility . Youre right hindsight is 20/20 .

 

Hunt2871
Posts: 4
Joined: Mar 2018

To this:

"The VA doctor said" its just as well it wasnt found earlier because you lived such a high quality of life until now"

I was officially diagnosed 2 years ago with very early stage PC but I would have been diagnosed several years earlier had it not been for a Army medical clinic fouling up a blood test and it being caught in an audit.  The only change in my condition over that period of time is that I would have been worried about it for longer.  My situation isn't nearly as dire as the one described by the poster but there is some sentiment, even in the medical community, that PSA testing and PC diagnosis is "overdone" in the west and leads to all sorts of anxiety and un-necessary treatments with some truly intolerable side effects in many cases.  There is no telling when your partners condition might have been diagnosed and nothing that says it would have made any difference had it been caught earlier.  It sucks.  Good luck and I hope your partner and yourself come out the other end of your shared troubles at a better place in life.   67 is pretty young in this day and age.

 

RobLee's picture
RobLee
Posts: 259
Joined: Feb 2017

"... there is some sentiment, even in the medical community, that PSA testing and PC diagnosis is "overdone" in the west and leads to all sorts of anxiety and un-necessary treatments with some truly intolerable side effects in many cases."

I was officially diagnosed 2 years ago with late stage PC but I would have been diagnosed several years earlier had it not been for... the UNFORTUNATE recommendations a government (nanny state) panel, the USPSTF which promulgated the opinion that PSA results alone were insufficient cause to proceed with further investigation of prostate cancer in patients who presented no other physical evidence.  Therefore, based upon repeated normal DRE's and a negative biopsy, my cancer went untreated for several years.

Since you feel that all you missed in those two years was "additional worry" (despite the unfortunate circumstances surrounding the snafu at the VA) you are probably fortunate that "The only change in (your) condition over that period of time is that I would have been worried about it for longer."  In my case, the additional two years allowed the cancer to progress to stage 3B and required surgery and radiation and two years of hormone therapy.

Again, I too am fortunate that my cancer was eventually discovered and treated just in the nick of time, before it had progressed to stage 4 and metsatasized. Thank goodness that I was able to avoid chemo and its horrors. But still I cannot help but wonder how much easier it likely would have been to treat it five years earlier, when my GP first sent me to a urologist because of my elevated PSA... a urologist who merely told me that my PSA was "nothing to be concerned about".

MK1965
Posts: 158
Joined: Jun 2016

Rob,

i do not want to make you mad, I-know you are against me every time I post something. But my dear oponent; we have something in common:you are complaining you were diagnosed to late, and on the other side, I am complaining I was diagnosed too early. Looks like we both are suffering but we have different suffering: I am suffering too early SE of my treatment,and you probably would have better outcome if diagnosed in time.

From my point of view, you enjoyed longer life free of SE, and from yours, I have better chance for cure.

Who is wrong, who is right? No wrong or rights here.

Everythyng  depends on personal choice. ( not always like in my case)

I would rather enjoyed life free off of SE, and you, you maybe  would rather have better chance for cure.

This is never ending Hamlet‘s dilemma.

Btw, happy Easter to you.....

MK

nup0k1
Posts: 5
Joined: Feb 2018

Tic,NO,MO,G 8 means that your partner was biopsied and cancer cells were found with needle removing prostate sample (Tic); NO (No cancer cells found in lymph Node), Mo (No cancer has spread beyond the prostate region (ie No Metastasis). Staging apparently is very misleading in some cases. G=Gleason Score by pathologist by comparing the cancer cells with the parents cells to see how different they are. The higher the score the more aggressive the cancer cells. Normally the PCs are very responsive to HT treatment. Keep a positive outlook as I am too in my case. 

 

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