Hi friends! Just returned from a visit at MD Anderson and had good news I wanted to share in case it helps someone else here.
My case is a bit unique - I have advanced prostate cancer, but the only place I have any sign of metastatic disease is in the T8 vertebra. (I’ll leave the rest of my history at the bottom of the post).
After having the third CT scan and bone scan in the last 18-months, I again showed no change. My PSA has gone from 227 in 2015 to undetectable for a year and slowly rising now, bouncing around a bit, to 1.6.
So my doctor hypothesized that I may have no other metastatic disease. She confirmed this by ordering a PET scan and a prostate MRI. To address the slowly rising PSA, she is adding Zytiga and Prednisone to my Lupron therapy. But she also wants me to have either radiation to the prostate, a prostatectomy or both. The theory being that perhaps they can significantly slow the growth of the cancer or kill it. If this works, she hopes to give me an ADT holiday in about a year (assuming my PSA goes to 0 or stays very low and stable), or, best case, with ongoing monitoring, stop it forever.
She stressed this is not the conventional approach (I have read about others on this site talking about it). Happy to see that they are treating me, with my personal disease circumstance, and not just doing what ‘the protocol’ suggests.
Whatever I choose (radiation and/or prostatectomy), I’ll keep everyone posted on my results in case it helps others.
Here’s my history: PSA 227, diagnosed in May 2015, Lupron since diagnosis, PSA went to 0 in 4-months, stayed there for a year. Had radiation at diagnosis to T8 vertebra and had 6 rounds of chemo in the fall of 2015. Gleason 4+4 . PSA now 1.6 after slowly rising for 18-months.
Have a nice weekend! My wife and I are! First good news in a long time! 😊 As one of our friends on this site always says, “never give in!”
James
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A very welcome news and I celebrate with you on your journey. This has been my 10th day using doxycycline and vitamin c. Yesterday I taxed my prostate system so I will enhance my treatment adding omega 3 fish oil 2x1500 mg on Tuesday, Thursday and Saturday. I have so far managed to survive 10 days with my treatment without any adverse effects.
I just came across your post, and am curious about your supplement regimen. I was diagnosed with advanced PC with mets to the pelvic bone, in June 2018. So far, in my short experiences with doctors, they are concerned generally about supplements that may interact with my hormone therapy (Elligard with Zytiga+prednisone). I have been on this therapy for just a few weeks so far, with minimal side effects.
I have been taking several supplements (calcium, fish oil, green tea, pomegranate, gaba, l-theanine, Zyflamend, lycopene, turmeric, D3, CoQ10, and Life Extension's immune Senescence protection formula) But I haven't gotten any real advice from the doctors as to what to take, except for telling me to stop taking my daily multi and any anti-oxidants (i.e Ester-C). I have seen posts about using Milk Thistle for liver enzymes, and am considering starting it, but am waiting for my upcoming blood work first. Are you taking the supplements on your own, or have your doctors recommended them?
I am not an expert but I have a friend who is an herbalist for those in chemo or not in chemo. I will check with her again. But milk thistle protects your liver and I don't think it interferes. I have a list of herbs etc that CAN BE TAKEN WITH CHEMO. LET ME LOOK FOR IT XOXO
I recently came across Dr Geo Espinosa at drgeo.com . He is a holistic urology doctor, and recently published a book titled "Thrive Don't Only Survive: Dr.Geo's Guide to Living Your Best Life Before & After Prostate Cancer". I have not read it yet.
He also has a line of supplements for PC patients at xywellness.com . I just found this yesterday, and it looks quite interesting. My oncologist is very hesitant for me to add any additional supplements as I have been on Zytiga just one month so far, and he is concerned about any possibility of reducing its' effectiveness. My hormone therapy is working well, as my PSA has dropped to 0.5 so far.
Ty so much I'll look that up as well. Great to know there's people on top of the supplent protocal as well. This is my friends, she consults cancer patients and has a huge following truly blessed and gifted. This is not specific to pca. It's specifically for chemo and radiation patients because doctors often day take nothing,which is a theory I don't subscribe to.
By Angel Howerton
CHEMO & RADIATION
People ask me all the time Angel what can we take while doing chemo or radiation? For 90 % of you you can safely take the supplements listed below
ANEMIA : Black strap molasses, Hemaplex, Ferrum Phos cell salts from Hylands, Beet Root
Insomnia : Valerian, Passion Flower, Hops, Skull cap, St John's Wort, Calms Forte
ANEXITY : Rescue remedy, Calms forte by Hylands, Passion Flower, Lavender Oil,
CONSTIPATION : Liquid Cal/ Magnisum Citrate from the Heath food store. Reflexology
MOUTH SORES : Coconut Oil and Baking soda
To keep from losing muscle mass and to keep from losing too much weight please take a good protein drink .
Vega Sport or Alive Protein and Hemp Hearts are great too
Make sure to get enough fiber, Chia Seeds, Flax Seeds, Pysullum Husk
Keep PH level up, Drink lemon water twice a day and juice
Eat Healthy stay away from all red meat and dairy
NO SUGAR!
No GMO,
No Processed Food
Drink Plenty of Fresh Water
Juice
Gluten Free Diet
Remove all Toxic Chemicals from your home..and Toss Out all toxic beauty Products
JUICING "Carrots. Celery. Ginger. Garlic. Cilantro. Parsley. Bell pepper. Cucumber. Dandelion. Kale ,Spinach. Peppers. Beet, Apple
"No more then 3 Juices a Day While doing chemo"
On your off weeks drink more juice and drink 2 cups Essiac Tea
Please after your therapy juice 8 glasses of juice daily and up your dose on MSM Silica, Selenium, And Drink 2 Cups Essiac tea a day and adjust your natural healing protocol so you will stay healthy and cancer free..remember cancer cannot survive in a body that has a high immune system...
""Need to do a 21 Day Chemo or Radiation Detox"
2 Cups Essiac
BENTANITE Clay 1 tablespoon 2 x a day in water I like
Aloe 2 Oz a day
Oregano oil on bottom of feet
Up dosage on Milk Thistle
Solgar liquid Omega's
MSM up to 4000 mg
Rosemary Essential Oil
2 tsp of Black Strap Molasses
4 Activated Charcoal Capsule A Day
I am not a doctor, I just share what I have seen work and what I have researched. Please do your own research..There are so many amazing things we can take and do to help our body's heal <3
I Personally Healed from stage 4 MMMT CarcinoSarcoma doing Natural remedies 5 year cancer Free Thriver
Hi Roland. How much C are you taking, and how? I am planning an experimental blast of Doxycycline, Azithromycin, and high dose oral vitamin C to approximate to a recent paper from Salford University (Prof Lisanti, who never replies to emails) about killing cancer stem cells. I want to get as close to 250 micromoles/l plasma level as I can. I am guessing I need about 20g start dose followed by 5g per hour for as long as I can keep it up. Hard to judge because 250mmol is at the upper limit of what oral C can achieve. I looked at making liposomal C but the amount of Vodka in the recipe would see me drinking about a quarter bottle per day! Any comments appreciated - dose rates, treatment length and frequency. I'm determined to leave no turd unstoned, and any cancer stem cells lurking around are on borrowed time. I hope.
I know I am replying to an old post but just wondering about the regimen of Doxy, Azithromycin & Vit C you mentioned. Did you manage to start it and did it make a difference, particularly in keeping down new Mets. If so, what was your oral dosage to obtain the serum levels mentioned?
Who can say what does what, but I have no mets. Every 6 months I do 100mg Doxycycline, 250mg azithromycin, and 18 hours a day of vitamin C. For the C, I start at 5g and then about a gram every hour until you sleep. Do this for 6 or 7 days. I suggest sodium ascorbate rather than ascorbic acid. I also suggest you take 50mg of zinc a day split so you don't vomit. Doxycycline is a zinc ionophore, as is quercetin and EGCG. Take them.
Alan, I am almost done with 24 cycles of radiation to prostate and to the multiple mets in the pelvic area, Having some digestive side effects , but hopeful we can knock it back a whole lot after all this time (11.5 years) I will keep the group posted how this turns out. Your post sounds very hopeful, I am happy for you. Have a great weekend. NGI
Good luck with your treatments. I am hopeful you get a tremendous response and that the digestive issues are very manageable and temporary. Please keep us posted! And thanks for the well wishes. We are very optimistic with the new approach they are going to take.
I seem to be in a similar position to you with only one locatable met outside the prostate, in my case in T10. This was in fact there right from initial diagnosis but it was assumed to be some other kind of bone lesion. I have had a prostatectomy and radiation of the prostate bed without much effect on PSA. ADT kept it down for a few years but it had started to rise again. I have now had radiotherapy using Cyberknife to T10 and this had a marked effect on PSA, getting it down from 6.75 to 1.7. Unfortunately I think it is now starting to rise again but await the next blood test for confirmation of this.
RH: hi, just wondered how the bone met at T10 was differentiated from a bone lesion? I just had a Ga68 PSMA scan which identified a bone lesion at T10, but there was no uptake, and therefore not determined to be a met. Did you have a similar diagnosis before yours was classified as a met ?
I was in extreme pain and had a 227 PSA. Had a bone scan and an MRI and was told it was a bone met - they showed me the crack in the vertebra on the scan.
I did not have a PSMA scan until a couple of years later. No sign of any activity anywhere except in the prostate. So they removed my prostate in July 2018. PSA has been undetectable for the last 14 months. So far so good!
I have similar symptoms to yours. When I asked about radiation or removal of the prostate my Oncologist said "the horse is already out of the barn" so either option would be moot. I asked him to check with his radiologists. The radiologist agreed with my oncologist that it would be moot. I find this strange. Why not attack the mother ship? I'm going to get another opinion. I like the direction your doctors are moving in. Please keep us posted on the results. Good luck!
I received the same analogy when I was diagnosed. Which is why I received no radiation to the prostate and was also not considered for a prostatectomy when I was diagnosed. This is emerging thinking that it might make sense to go against the conventional approach followed for many, many years. There is no formal studies yet to suggest that this approach will actually work. I like that the doctors are starting to question conventional wisdom - in case the conventional wisdom is wrong. It’s at least worth questioning as we all meet with our doctors.
One important note - my doctors don’t think this would work if a patient has more than a few mets. Also, they point out that they used the most sensitive test (PET scan) to look for any additional cancer presence, which they described as the best technology available today. But it is no guarantee it will turn out like they hope. But we are all optimistic.
My Uro was also of the mindset that there is benefits to taking out all the cancer that can be found. Before my RRP, the scans showed some suspect lymph nodes. He took 19 nodes out along with the prostate. The nodes turned out to be normal, but I ended up having adjuvant radiation anyway from the bad pathology
You certainly seem like the ideal patient for oligometastatic treatment.
The old idea was that if you had one observable met, it was nonetheless "everywhere" & you needed a systemic treatment. But a minority of patients don't get mets "everywhere". Oligo means "few" & one met at T8 qualifies.
I had surgery & salvage radiation 13 years ago, & radiation on L5 3 years ago.
Regarding your prostate, you do need to treat it if T8 is to be zapped. There will be morbidity, unfortunately.
If you go for surgery, that leaves radiation as an option if another met appear (many years ahead) in the region.
James it seems if going for a cure with Stage IV prostate cancer the guys that have fared best have worked with doctors that use unconventional methods. These are the doctors that are blazing the path for treating this disease. It blows my mind the amount of men who do not seek treatment options outside of the normal prostate cancer protocol. I went through a few doctors before finding one that would do surgery on me because I had advanced disease. He looked at me as an individual and not as a statistic. I started this venture with a PSA at 286, Gleason 9 and pelvic and abdominal nodes involved. I had surgery a year ago and currently <0.01 with clean scans.
I chose a prostatectomy over radiation in my situation because I wanted to save the RT card in case it is needed later. Also being in my 40's I didn't want to do any more damage down there than what was already done. I have no incontinence issues but am dealing with ED hoping after HT is done that may get better as nerve sparring was done on one side. My doctor and I decided to follow up with 2 years of hormone therapy after surgery to aid in wiping out any remaining cancer. I have 1 year left if numbers remain undetectable.
Sounds like your in great hands and stay strong whatever direction you take.
Ron, appreciate your response and encouragement. Seems like the prevailing opinion I’m hearing is to do what you did - get the prostate removed and save RT as a later option. Very helpful advice when I meet with the doctor to discuss.
Best of luck with your journey, too. Praying your PSA remains very low so you can get an ADT holiday! I’m hoping for the same thing soon!
Hi - I guess the doxycycline and vitamin C didn't work then
I hate bad news, and I hope Roland succumbed to something else. How do you make your liposomal C? Is it an accepted tested method? I take masses of stuff and I hope some of them work. Getting a high Vit C concentration is crucial, and the amount I need will certainly be helped if I take liposomal. I have tried the odd high dose oral, and it's hard to swallow. Any tips?
Hi. Thought you might like this. To get to 250umol vit C I intend to take 1g per hour of ordinary VC and 1g per hour of DHAA. Along with 100mg Doxycycline and 250mg Azithromycin. Probably 2 consecutive days, once a month... The video is very interesting for a vitamin C enthusiast
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RO said 6-12 months
Castration resistance
