Update: dramatic response from the ch... - Advanced Prostate...

Advanced Prostate Cancer

21,020 members26,199 posts

Update: dramatic response from the chemotherapy

henukit profile image
35 Replies

Here's my update at last.

In August 2018 I finished Docetaxel chemotherapy (6 courses) while being on ADT. Below is a quick rundown from start till now.

The initial PCa DX was done in March, 2018. Prior to it mostly unrecognized symptoms gradually increased over the course of 2-3 months included pain on the lower bowel, frequent urination, weakness and tiredness, loss of appetite, sleep, exhaustion, frequent respiratory infections. Prompted by this, I started tests and treatment at GI physician who performed colonoscopy and endoscopy and only found H. Pylori which was subsequently treated via antibiotics. No other anomalies, tumors or malignancies were found. He failed to link symptoms with the prostate pushing on the bowel and causing pain. Even after seeing a prominent bulge from the inside the bowel through his scope. Negative point to this one. Lesson: Don't rely on specialty physicians to make observations beyond the scope of their specialty area.

DX process:

After unsuccessful attempt to relieve symptoms via seeing GI doctor I turned to primary physician and he performed DRE and he did feel the bulge (Bingo!). The subsequent PSA test showed over 500 ng/mL (he called me on Saturday and said with the dark trembling voice: I need to see you asap). Following MRI showed a very large tumorous mass extending to the left side pelvic area and reaching out to the left inner hip joint (I already started to left limp by that time, it prostate was pushing on the nerve). Luckily all other organs showed in clear no involvement: liver, kidneys, lungs, brain. That was the only good news at that period.

Next prostate biopsy confirmed aggressive PCa with GS: 5+4 = 9

Bone scan showed a couple of suspicions lytic lesions: one on the inner hip and another on one side of L5. The biopsy on L5 site found trace presence of PCa related cells. The verdict: advanced metastatic prostate cancer, stage 4.

Immediately after DX I received one month shot of Firmagon at the end of which PSA dropped to 30. Next month we started ADT with 6 months shot of Lupron that followed by Docetaxel 150 every three weeks. The PSA during this period taken every month showed stable downward trend:

5/1: 4.34

5/23: 1.94

6/15: 1.13

7/6: 0.80

7/30: 0.56

8/20: 0.55

9/28: 0.43

The last PSA reading is month after the last docetaxel infusion. We performed a high resolution MRI this time and it showed:

- The tumorous mass is completely gone leaving just some scar tissue

- Prostate returned to the normal size

- No lymph nodes involvement

- Lytic lesions are getting smaller and showing calcium build up (sclerosis) confirming that active process stopped and bone healing is going on.

- Bone density scan and mineral metabolism study showed normal parameters

During last appointment, MO trying to hide excitement said: I can't characterize this other than a very dramatic response to the therapy. And he repeated "dramatic" throughout conversation a couple more times, that's how it got in the title ;)

Other than following his protocol (essentially CHAARTED standard of care) I did the following:

- Fasted 36 hrs before and 36 hrs after chemo infusions

- Took Metformin starting from 1000 mg and ramping up to 3000 mg per day

- Received from 50 to 100 g of IV vitamin C in between of the chemotherapy infusions (once a week on average)

- Took anti-inflammatory drugs (I have Ankylosing Spondylitis that flared badly after Docetaxel infusions): Indomethacin then Celebrex

- Suppressed inflammation with naturals: Boswellia extract, Longvida Curcumin, Quercetin, Spirulina

- Took vitamin D (there was previous deficiency) and calcium/magnesium/boron with Vit K1/K2

- Drank a lot fluids and herbal teas, green fresh squeezed juices morning

- Grew and consumed 30-40 g of fresh 3-4 days broccoli sprouts

- Maintained strict non-starch diet (I've been on it for 15 years anyways)

- Exercised: weight training on good days, walking on bad days, swimming in between

- Kept active: continued to work, travel, went to Mexico and Dominica to spend time on the beach, had regular sex and maintained a positive outlook

I feel really happy with results and am looking at the next options. My case will be presented at the next oncology panel at the clinical research facility and all physicians will have a chance to say opinion on what could be the next step. MO wants to introduce me to the radiation oncologist and says that SBRT is probably my next option. Or possible RP. I'm thinking Zytiga. We will see.

Thanks for all the information you're sharing here, it arms with the knowledge crucial to evaluate the situation and decide on the course of action. Hope you guys find it helpful as well.

Written by
henukit profile image
henukit
To view profiles and participate in discussions please or .
Read more about...
35 Replies
spinosa profile image
spinosa

yes, this seems quite dramatic! Good for you!

Tall_Allen profile image
Tall_Allen

Great response! Did they biopsy any of the lytic bone mets?

henukit profile image
henukit in reply to Tall_Allen

The did at the diagnosis but didn't do now.

Tall_Allen profile image
Tall_Allen in reply to henukit

What did it show? Lytic mets are unusual for prostate cancer.

henukit profile image
henukit in reply to Tall_Allen

I had the same questions. So they went ahead and did a biopsy:

FINAL PATHOLOGIC DIAGNOSIS

Right transverse process L-5, biopsy:

-Fragments of bone with fibrosis and scant atypical cells with crush artifact, highly suspicious of metastatic prostatic adenocarcinoma, see comment

COMMENT:

The following immunohistochemical studies were performed. The results are as follows:

AE1/AE3: Focally positive

CAM5.2: Positive

PSAP: Weakly focally positive

PSA: Weakly focally positive

These findings are highly suggestive of diagnosis of metastatic prostatic adenocarcinoma. Clinical and radiologic correlation is recommended.

Tall_Allen profile image
Tall_Allen in reply to henukit

It sounds like some kind of neuroendocrine differentiation (giant cell?) is starting to emerge. You may wish to discuss with your oncologist if a cocktail of docetaxel + carboplatin is appropriate on your next chemo.

henukit profile image
henukit in reply to Tall_Allen

How do you tell?

Tall_Allen profile image
Tall_Allen in reply to henukit

From the immunohistochemical report you provided. Talk to your oncologist about it.

henukit profile image
henukit in reply to Tall_Allen

I will, thanks. I tried to do a quick review, but that's too much to read as of now, looks like this ncbi.nlm.nih.gov/pubmed/168... suggests NE but at the same time NE should be negative for PSA. Or it's just a mix? I will have to study more on it. ncbi.nlm.nih.gov/pmc/articl...

Tall_Allen profile image
Tall_Allen in reply to henukit

Let your oncologist do the work. You and I are not experts in immunohistochemistry. He can consult with the pathologist who did the analysis.

henukit profile image
henukit in reply to Tall_Allen

Explained that it's quite normal, no NE development in the report.

Tall_Allen profile image
Tall_Allen in reply to henukit

Ask for a pathological consultation

MelaniePaul profile image
MelaniePaul

Wow, that's an amazing story! I am delighted for you! That was a brilliant response to the treatment!

Patrick-Turner profile image
Patrick-Turner

Hi henukit

I think you might be extremely lucky to find your Pca tumours have been reduced so much in such a short time, and your story so far shows that different men have a very diferent story to tell.

Rather than write out yet again what my experience has been so far with Pca, you can read all of it at

turneraudio.com.au/Patrick-...

I probably had Pca start in 2005, but because Psa was low for the amount of Pca present at PG, I was found to have Gleason 9 with 9 positive biop samples in 2009 at Psa 6.0. Docs found it impossble to proceed to remove PG in open RP, so in mid 2010 I began ADT and had EBRT and in 2017, bone mets were found in PsMa gallium 68 scan, and they have increased a lot in number and size ever since, after ADT, Cosadex, Zytiga all failed after awhile.

11 weeks ago I began Docetaxel with Psa at 12.0, and now is 40++ and tomorrow I see onco to decide where from here. I'll try to get Lu177 and Ra223, because nothing else will ever work.

It is early days for you, and I would not assume your fight is over, because although much of your tumour seems to have reduced in size, it is the nature of cancer to mutate with each generation of new cancer cells, and although many cancer cells died, there will always be survivors which happen to have resistance to Docetaxel or anything else doctors throw at it. The survivors then grow with very little to stop them, and it is possible for survivors to not generate Psa or generate PsMa so PsMa scans look good, Psa is low, but there definitely is cancer present, and without PsMa then Theranostic treatment with Lu177 is useless, and I guess you need to have some biopsies done on Pca to determine which chemo if any would halt the survivor cells.

But right now, I guess you are relieved to find much progress seems to have been made. So try to enjoy your life eh?

I have lived the life of part time athlete and from 2006 to now have cycled 135,000km, and eaten no junk food, and I have been exceptionally fit and healthy while Psa wandered up and down and while knowing it could all explode real fast in future, which it seems to be doing right now. I tried apricot kernels and cannabis oil I grew myself, and it made NO difference to slowly rising Psa and I see ZERO evidence anywhere that all manner of herbs and potions do anything at all, except to make your wallet lighter. But it is probably quite benign to adhere to the practice and theories of alternative food habits, so if you feel better mentally because of curcimin + sex then I suggest you keep it up.

But ADT has totally exterminated any ability for me to have or enjoy sex, and besides, a 2 hour cycle ride is better for me at 71 than trying to make love to a non-menopausal lady of 50, lety alone any lady my age.

The ladies don't like cycling.

But my cycling probably will cease soon if I get bone pain from micro-fractures which are going to happen if I do not halt Pca increasing in my bones.

I saw biggest mets were white patches on CT total body scan and some were up to 1cm dia. So I know I am in Deep Shyte unless I can stop the bone mets.

Have some hope you continue to get Pca reduction, but be on lookout for it beginning to get worse in future; it ain't over yet. And with Pca, remission is extremely rare. 1/3 of men diagnosed with Pca die from Pca, and most try everything possible from docs.

Patrick Turner.

Fitzbruce1 profile image
Fitzbruce1 in reply to Patrick-Turner

Good luck to you Patrick! You sound like you have lived a good life. I hope u r able to keep biking for many years!

henukit profile image
henukit in reply to Patrick-Turner

Hey Patrick,

That's a heart touching story of yours, thanks for sharing. It also shows that how different this illness can be for each individual. From the onset till the end it interweaves with our genetic features and characters and takes on it's specific idiosyncrasies. It looks like yours started from the different kind, the one which doesn't generate much PSA from get go but quietly spreads and sneaks on you.

I know that chemo kills only fast dividing cells and that's just what happened here. But there are other types of cells, that are not affected by this treatment. Tumor initiating or so called cancer stem cells (CSC) that responsible for the recurrence and new phenotype development. Researchers have identified them and been already working on figuring out how to attack eliminate CSC. From nano particles loaded with targeted drugs to immunotherapies the new generation of treatment methods is going to emerge in the coming years. Hopefully, standard and complementary treatment can delay onset of aggressive form and buy us some time before the heavy weaponry arrives. Most of the components I used shown in vitro/in vivo efficacy in the lab or pre-clinical setting (unlike miracle claiming soda or apricot kernels). Some of them already in Phase I or II trials and have shown promising effect. The problem often is bio-availability, precision delivery, and effective dosage in humans which is being worked on.

I love cycling too, my son is waiting for me to get in shape so we can go on a long cycling trip together. He's just turned 16. Don't get me wrong. I'm not here to celebrate the end of my journey. I totally understand that I'm not out of the woods yet. I just a passed the first albeit very scary but not the last such moment of my life. And it's not the first time I was looking at the death's face, but it was definitely not the smallest event. I've had single engine plane failing me on take-off and faced a storm in Gulf of Alaska on a small boat hundreds miles from the shore. All such events taught me something. Something about how precious our life can be and how close we're walking the edge at times. But here, I just wanted to share positive and take a deep relieving breath enjoying the moment of sunshine, calm and happiness before it starts getting dark again. And I know it will, and I'm going to be prepared. I wanted to share this in order to encourage others to fight and enjoy the journey no matter how hard it might be. Thanks for all you go through and endure, brothers.

Patrick-Turner profile image
Patrick-Turner in reply to henukit

Hi henukit,

Your attitude inspires me. Yeah, keep cycling if you can, and only worry when the pain stops you, if there is any.

I used to love motorcycles and rode maybe 250km over 10 years between 19 and 32, and I nearly died several times and I went to a few funerals of friends who I think just didn't have as much sixth sense like mine; they would ride without a helmet or not adjust their speed for possible crash, and paid a price. I worked on building sites for 30 years, and still had 5 digits on each hand and a spine that was functional, and I didn't drown my brain in alcohol or so many other things that destroy a man before 50, like marrying a toxic wife, getting up to neck in debt, going broke from absurd business plans.

The 240,000 km I have cycled in my life was riddled with near misses and narrow escapes, there is a daily risk that continues each time I turn a wheel with a leg amoung the car, bus and truck drivers, many of whom think I am Cyclist Vermin.

But CONSIDER HOPE!

I got a huge dose of hope this morning when I talked to my oncologist at my local public funded Canberra Hospital.

He was very worried by latest fast rise of Psa for Docetaxel.

The total body CT scan showed more new bone mets so the bone mets are all growing. Its difficult to know if the CT scan is seeing bone mets which are growing, or ceasing to grow, because the radioactive chemical used for this CT scan would give same result for met growth or met reduction, except that there are new small mets, so Docetaxel is assumed to not be working as expected - YET. Psa was 45, up only 5 points from 40 about 2 weeks ago so it is now NOT doubling in a month, or else I could have expected to see Psa of about 60.

The Docetaxel might be having good effect on my lymph node mets, not seen in body bone CT scan.

I was told to shut up and listen to his 3 options,

1. Keep going with Docetaxel, but book Lutetium177 treatment which cannot be sooner than 6 weeks from now.

2. Enter a trial where a computer decides whether I get Lu177 or Cabazitaxel, without any ability to change from one to other if whatever is chosen fails to work.

3. Try to get me into immune therapy trial which he thinks is open in Sydney.

He said option 1 is my best bet, because I can pay for the Lu177 and there's Cabazitaxel available in Canberra if I need it, as well as carboplatin.

He dictated a referral to Dr Lenzo to get Lu177.

He also suprized me by saying Radium223 isalso available here in Canberra, and I hadn't thought that possible.

He booked me for another PsMa Gallium68 PET / CT scan which he and Dr Lenzo cn compare to make sure my bone mets are able to uptake PsMa and if this is so, then Lu177 would be effective.

I ended up feeling very happy with the outcome of my consultation with this doctor of mine, and respecting him a lot more. He showed he is right on the ball and after reading so much online about other men's difficulties with Pca I know I could not be in hands of any better doctor. And the consulations are all funded by Medicare. The Lu177 will cost the price of a decent new car, but I don't mind, ya gotta pay a bit to stay alive.........

I should be able to cycle around at night without any headlights because I'll soon have had so much radiation my bright green glow from PG and bright blue-purple glow from bones will light up the roads, and frighten motorists SO MUCH, the risk is they'll swerve off the road and hit a gum tree.

I should get results of PsMa scan in a week dependng on bookings, and another Psa test which might show the Docetaxel is beginning to work with what seems is a stubborn bastard to deal with, also sneaky, waiting years to ambush my QOL.

I granted myself 2 days of not cycling because of wet weather yesdy and today, but also because the neuropathy effects on legs was not good, with one leg cramping and getting rashes on both, and tingling nerves and restless right leg at night. The nerves sure don't like chemo. But once underway on bike I feel fine, and can tootle along at average road speed of 20kph, and when some young bugger overtakes with that smug look on his face, I just ask, "what took ya so long?"

At 62, and at diagnosis, bike speed was up to 32kph but the following ADT knocked it down to 26kph, then I had 8 years where aging knocks off 0.5kph each year, and then chemo knocks it more, so to cycle at all is a wonder, and the docs are amazed I am still cycling, and see no reason yet why I should stop, and nobody is saying my bone mets are big enough to cause fractures.

With luck, I'll get Aunty Lutetia or Unkel Radium to pay my Pca a visit and shoot it between the eyes with a 45 loaded with radiactive bullets.

Always look on the bright side mate,

Patrick Turner.

rococo profile image
rococo

Excellent complementary therapy and the courage to apply it for such excellent results. Hoping you will be around a long for inspiration and information to our members. Rocco

larry_dammit profile image
larry_dammit

Great news brother, goes to show you the hole in modern medicine today. Specialist can’t treat the whole patient. Fight the good Fight 🙏🙏🙏🙏

Hazard profile image
Hazard

This is indeed a dramatic result I am very pleased for you and hope that your excellent health regime keeps you in remission for a long time.

Cheers

zenbee13 profile image
zenbee13

What made them decide to do the Vit C injections? I have approached my MO about this,as Linus Pauling demonstrated the efficacy decades ago for treating tumors of all sorts. This is quite exciting to me.

Most of all way to fight and get it right.

henukit profile image
henukit in reply to zenbee13

I did it as part of complementary plan myself with MO permission.

are2yvr profile image
are2yvr in reply to zenbee13

Interestingly at high doses vitamin c has demonstrated pro-oxidant effects. There is a phase 2 trial at Hopkins combining high dose vitamin c w Docetaxel.

Great response to the treatment. Your positive attitude is right out of the “Radical Remission” playbook and, as some suggest, a key piece of the healing journey.

On the basis of the most recent 2018 journal abstracts and conference topics, treating the “primary” seems to be a no brainer.

in reply to are2yvr

I did the high dose -c amongst other homeopathic alternatives during treatments. Iam a firm believer in the natural path. Although, with an aggressive APC only the harsh treatments can slow the roll of the beast. I think that the natural stuff helps us with recovery and helps the effectiveness of treatments... That’s my story and I’m sticking to it.. each to their own. Peace to you and good health...

Patrick-Turner profile image
Patrick-Turner in reply to

I don't much believe in alterantive herbs, potions, or vitamin pills, but then I am inconsistent because sure enough, I chew up two vitamin C pills and take vitamin D during low light conditions of winter.

But I also eat a pile of green raw vegies in a salad every night for dinner, and there has to be many natural vitamins and micro-nutrients I get from diet because I never ever consume any fast foods, eg, the junk at McDonald's. Having more of a vitamin may do nothing, or even be toxic, but afaiac, diet cannot do much against a DNA error which causes cancer.

Many healthy ppl with better diet and lifestyle have died of cancer.

Lance Armstrong got cancer in one testicle. Fortunately, his treatment beat the cancer and he went on to win TDF many times, although not without blood doping about which he lied for years.

But it has to be said that a man can achieve high challenge things even if he has only one ball. I guess Nature evolved animals to have two balls because there was always a chance that another animal might bite off one ball. So those with 2 balls were more likely to breed than those with only 1 ball, which, once bitten off by a smart other animal, would do a similar job on a man as ADT does now.

But I heard Margaret Thatcher had 3 balls.....( No Rodger though ).

Patrick Turner.

in reply to Patrick-Turner

I chopped the family jewels 9-16 but who’s counting?? Addios Muchachos!

Patrick-Turner profile image
Patrick-Turner in reply to

Family jewels? Are you kidding? I reckon that after Rodger, the Two Balls are a primary cause of men being led astray by silly notions of romance, ie, the possibility of getting free sex, while Fanny hopes for wedding bells and a financial security.

What is the least said sentence in any language around the world?

"Jus' lie down here luvvy, it won't cost yer anyfink"

Anyway, Rodger, balls, testosterone, prostate gland all are a man destroying team. Not to mention the God Of Sex & Romance who tries to make sure a man feels like a fool so often.....

Patrick Turner.

zenbee13 profile image
zenbee13 in reply to are2yvr

That is very encouraging. As I stated in the first post; The results that Linus Pauling and a sister therapy in Canada found that by injecting Vitamin C you cause hydrogen peroxide to be in the blood. Healthy cells have a protection, however Cancer cells do not. This is one time the Mayo clinic blew it and tried to replicate using oral dosages of Vitamin C. You can't get to the same system saturation needed to create the Hydrogen peroxide, so they panned the earlier study, and so did AMA.

Was it expensive and were you able to get it covered by insurance?

Peace,

Bees

in reply to zenbee13

I did high dose Vic -C during treatments first 2yrs . Costly $150 per 11/2 hr I v . Not covered by insurance. I spent at least $30 k on alternative measures. I’m broke now, 5 yrs into this mess Still glad that I gave it my all initially.. I was in sad shape. I believe in the natural methods for anyone that can afford them ..

Good on you! Keep kicking the bastard.

Gourd Dancer

We must thank our lucky stars with great results of the tumors being gone.. I too fasted during RT.. others approaching treatment can google “ fast and live” for cancer..I grow m own broc spouts in a jar at home. This was recommended to me by an alt care oncology specialist at the U Of A in Tucson Az.. Thanks for sharing .. wish you the best going forward..

j-o-h-n profile image
j-o-h-n

Damn the torpedoes full speed ahead!

Good Luck and Good Health.

j-o-h-n Wednesday 10/03/2018 7:33 PM EDT

I really appreciate all of your detail with what helped you get through the poison. It appears that the chemo plus Eligard is coming my way soon. I will reference your message and more to get through the 6 infusions to settle “the thing that won’t leave.” “Saturday Night Live” reference. 😊

in reply to

Push that unwanted guest out the door!

in reply to

If you hear “ Land Shark” at your door ? Don’t open it !

You may also like...

Update 3: End of Chemotherapy - Docetaxel

oncologist, who informed him that, like bone scan, CT does not show metastases. Everything is...

Update from my husbands SP Aug 2

they talked about doing Lupron next when he goes back for his next PSA and MO check end of OCT....

PSA from 0.15 to 2.42 in 12 months; but no metastasis?

scan that showed no mets to soft tissue or bone, followed by two different circulating tumor cell...

Meeting with RO - responses

and responses: 1) Since I am now at >.01 PSA on ADT for 2 months, could I gain anything from a PSMA...

Update

anywhere else. Dr did bone scan that showed improved bone scan with no new lesions. I haven’t seen...