Protocel 23

vickilind61

So, I am due to start chemo this coming Friday.  I am thinking maybe when I'm done with it, look at starting this.  I am NOT sorry I had my surgery (I do hate my TE though) and I do think the chemo is a good idea...but thinking of alternatives after is where I've been thinking lately.  What to do AFTER I'm done with all the conventional stuff.  Diet changes, exercise, etc.

Will you be on the Protocel for the rest of your life?

luv_gardening

Kat, most of us don't have active tumours to treat.  If I did I'd be seriously considering Protocel.  Sorry you're feeling discouraged, but I'm sure there are many cheering you on like I am.  Maybe there are women just waiting to see your results and whether they last while they use standard treatments, then, like you they'll start Protocel when they finish their current treatments.

I believe this is the best forum for you to detail your treatment as it will stand as a record.  Yours will be a groundbreaking thread. 

leggo

I don't know how I missed this thread, but I did. Maybe because it was moved from another forum. Kat, congratulations on your success with this treatment. I'm glad I found it. Looking for something to keep in my back pocket just in case. The progress sounds hopeful and I'm looking forward from here on in to hear you're doing. Wishing you continued success.

sweetbean

Very cool, Kat!!!!  I'm very happy for you!  Question - is the protocol schedule different for people without active tumors?  I just finished Herceptin and am looking into different CAM therapies that I can do.  I'm definitely interested in Protocel, but am wondering if I would need to do the five hour schedule.   What do you think?

KatRNagain92

WoW!  This is great and just what I needed this morning!  Thank you Ladies!

Sweetbean, If it were me (and it is! lol) I would do the every 5 hours.  There is conflicting data on 'maintenance' dosing (3 times a day) as to whether it prevents the cancer or just gives you the antioxidant properties. 

Since it takes billions of cancer cells to create one little lump, it stands to reason that even if you can't see or feel them, they are there.  My theory is that I didn't have a recurrence...they just never got it all.  Even with a BMX and tamoxifen, cancer was there all along making clusters that would not become evident for 2 years.  If that truly was the case, then I truly believe that Protocel would have taken care of this long before it got to this stage. 

I plan on taking Protocel for at least 2 years after I'm NED...maybe longer.  It's so automatic now It NEVER interferes with my lifestyle. 

And Joy!  Groundbreaking!  I love this...thank you!

sweetbean

Interesting - ok, you've convinced me about the five doses a day.  Are you allowed to take other supplements while you are on it?  I'd like to keep taking my low-dose neltrexone, melatonin, Vit. D, DIM, etc, but I seem to remember that a lot of those things interfered with it.  Also, I'm on Tamoxifen.  What do you think?

I have a friend who is TN who didn't have a great response to chemo - I think I will send her this info.

KatRNagain92

The catch phrase is keep it simple. 

My personal experience with Tamoxifen was that it worked against me.  But that's not to say that Tamox isn't right for you. I also doubled up on the melatonin when I was taking Tamox since I figured it would increase the efficacy of the Tamox but it didn't...quite the opposite actually.

Vit D is so easy to get by just sitting out in the sunshine for 20 minutes a day.  Your body automatically shuts off when it receives enough Vit D and the sun is so energizing.  However, the good news Sweetbean; is the supplements you are on are not on the do not take list!  

The two chemotherapies that are okay to use concurrently are 5FU and Xeloda. Radiation is also something that can be done while on Protocel.  Hormone blocking drugs should be avoided according to the book Outsmart Your Cancer. 

Heidihill

I don't know much about Protocel but if we are talking about Stage IV, I would think you would need to be taking something more than 2 years after NED just as I've been taking Femara more than 4 years now since getting to NED. The effects of an ovariectomy can last a while but is most likely not permanent. Wishing you continued good results!

KatRNagain92

Scanxiety is setting in right on schedule.  My scan is due for June 25^th.  My original Oncology appointment to go over the scan results was not until July 5^th.  I phoned the office and rescheduled my Onc appt for the 28^th.  I'm not waiting.  I'm also headed to Canada for a family reunion on the 30^th.  I want to be able to share the results with everyone because either way, we're going to party our asses off! 

I continue to be optimistic that I will have a good scan.  However, the ongoing debate of why would cancer pick and choose only the nodules I can feel to respond to Protocel but increase mets to where I can't see...also continues in my head.  

So, I've made an executive decision.  After this next scan, I just don't want another one for at least a year (or PRN). I'm tired of living in 3 month increments.  I hate the uncertainty and I hate the second guessing. I feel good, I look good and dammit...I just don't need the stress.  

I'm very pleased with the signs of lysing (mucus in my stools/nasal drainage) and also what I perceive as ‘traveling
pains' in my shoulders and legs. The lymph fluid is moving!  I've increased my water intake even more and I'm rebounding in earnest.  Yoga daily (and tapping!) doesn't hurt either!

There is also another Protocel messageboard + website out there for anyone who's interested.  It's called elonnascorner.com and she is a 22+ year survivor of a stage IV glioblastoma and she did it all with the original Protocel 50®/Cancell® formula dosing recommendations.

The forum is interesting and includes many many (many) different kinds of cancers...there are only a few breast cancers currently.  I have not participated yet...I'm just reading and processing (and yes, discarding some) for now.  I really believe that the Jim Sheridan family, the author Tanya Harter Pierce and the distributors are the "official" authorities on Protocel.  I'm not sure that she is completely supported by these officials...I think she may have been at one time, but then she kind of went rogue.  lol.

There are some good learning tools on Elonna's website (spot on diet suggestions, lysing information, etc.) However, she promotes the use of Bromelain and Protease (2 enzymes that break down proteins and aide in inflammation and digestion) and I'm just not there yet.  She is also an advocate to switch formulas for aggressive or metastatic cancers.  I'm currently on Protocel 23 (recommended for my primary BC) and I can't imagine switching to Protocel 50.  So, there's that sort of thing...and don't even get me started on Willard's Water because ‘you know who' will show up.  It claims to have cleansers and surfactants (lubricants) in it...well, guess what?  That's what water does....it cleanses and lubricates...so, just drink a lot of water folks and get active! 

The site is very supportive I will say that.  Unfortunatley, it appears they get that way through censorship and having a zero tolerance for opposition.  But, if you're considering Protocel, and you can read between the lines for the good of your own experience, it might be worth looking in to. 

Have a great week everyone!  

leggo

Kat, good luck with your scans. I hope it's nothing but good news. I totally understand not wanting to go every three months....I hate it too. Have fun at the reunion!

Anonymous

Hello Kat ! so very glad you're not discouraged from posting on BCO, it's so good to have you amongst us.  You give me hope that there are alternatives out there that do work.  So, you believe that Protocel should be used as a preventative ? I was thinking of keeping it in my back pocket, just in case.  It's so comforting to know that should one progress, there are alt protocols out there that do work.  I've fired Tamox and am taking a host of supps plus a DIM combo (all estrogen suppressors which is working !! pain and hot flushes and co. active as ever) and am looking to add natural AIs to the mix.

Should you decide to start your own blog, please keep me in the loop  oh, and good luck with the scans - Can't wait to hear that the nasties have shrunk !!

gentianviolet

Kat - I have been following your brave journey and I appreciate the fact that you have detailed it in this thread.  I want to wish you the very best of luck with your upcoming scans.  Sending good thoughts.

KatRNagain92

It's been an extremely stressful week.  My niece is on a path of self-destruction and it's killing my sister.  My brother lost his job and he's moving into desperate mode.  My mother is 74 but has aged as though she were 104.  My husband sat down and cried last night and I don't do so well seeing men cry...least of all my darling husband.

I'm also very saddened to learn of the passing of a BCO Angel from the Afinitor/evrolimus thread.  My heart is in tatters.  I made two entries on that thread...one to say I was joining the group and another to say I changed my mind and was going in another direction.  I started Protocel 10 days after Debbie started Afinitor.  I prayed myself to sleep last night by asking the Lord for strength for her family and to end cancer and woke this morning in the same way. 

I'm grateful that my "trial" has been positive but at the same time I'm overcome with fear of any treatment...non-toxic or otherwise. Last night I had a dream about drinking Windex.  Are we just all playing a game of Russian roulette?  So what if we follow our protocol exactly right and eat the right foods...will that just extend the time a little longer until it's our turn? 

I can't wait for my scan to just be over with already.  I don't even care (yet) about result's day, I just want Scan day over and done with.  I'm not allowed to do Yoga 24 hours prior (staying quiet with no exertion) and if there ever was a time for Yoga, right now would be it. 

I can meditate though, and I can pray.  So that is what I shall do.

Philippians 4:6 Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. 7And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.

leggo

Kat, I am so very this treatment did not work out for you as you had hoped. All we can do is try, right? It seems when one thing goes wrong, everything piles up at once and we just get mired down. No doubt about it, life just sucks sometimes but eventually the black cloud lifts. I can guess you're scared out of your mind but sometimes we just get lucky...maybe this next treatment will work for you. I know personally, when I get into one of these funks, the only thing that can snap me out of it is to think of all the kids I see with cancer, how brave they are going through all of this, and how they have it so much worse. Then I end up feeling sort of dumb for feeling sorry for myself. They haven't even begun to live life yet, have so much to lose, and somehow they muscle through. Again, my best wishes to you while you travel this new direction. The family problems will work themselves out eventually....worry about yourself first. Keeping my fingers crossed that whatever you try next gives you good results. Hang in there. Peace.

KatRNagain92

Hi Gracie...I think you may have mis-understood.  I don't know if Protocel has failed me.  I've got the usual scanxiety that everyone gets prior to a scan.  I am grieving for a fellow BC sister who took a different path.  I HOPE my direction is the right one and I will know with more certainty by weeks end. 

leggo

Kat, I'm so sorry. I don't normally read that forum. I'm sorry I misunderstood. Thanks for clearing that up. Good luck with your scans! Keeping my fingers crossed for you.

KatRNagain92

No Worries and thank you!  I hope you'll add this thread to your favorites...if the 4 palpable nodes I have (not) are any indication, I will be rejoice that Protocel is not selective. 

LilSchatzie

Hugs Kat, I'm following your story and wishing you the best on your scans.



Xoxo Karen

vickilind61

Kat, I will be checking in to get your results.  And I'm so sorry about your BCO Angel.  I saw the post from her husband.  Mae me cry, but I didn't leave a not because it is in the Stage IV only thread, which I really try to respect.  As horrible as I think I have it, I know you stage IV ladies are at an entirely different level. 

I am expecting GREAT results, BTW.

sweetbean

Hi Kat!

I'm lifting you up in prayer! 

xoxo

AnnE16

Kat,

I am so sorry to hear about the loss of your friend.  Keeping you in my prayers and I KNOW you are going to have a great scan and results!!

sweetbean

Thinking and praying for you today, Kat!

toomuch

Kat - I have been following your Protocel journey and am hoping that your scans reveal that what you've been feeling on the outside is what's going on inside too!

KatRNagain92

Well ladies....It's WORKING!

My PET scan results today showed SIGNIFICANT response to alternative therapy. 

Here's just a little rundown:

Left upper nodule described previously as metabolically active and can no longer be identified by PET and on the CT dataset is less prominent.  The left hilar lymph node has decreased metabolic activity with an SUV max of 1.5.  No new lung lesions are identified.  A dermal lesion present in the posterior left shoulder is no longer metabolically active and on the CT has almost completely disappeared.  Additional dermal lesion at the medial aspect of the reconstructed right breast has almost completely disappeared by CT and is no longer metabolically active.  A right posterior chest wall lesion also is improved as is a right lateral chest wall lesion.

Abdomen:  The subcutaneous nodule noted in the midline has resolved completely by PET and by CT.  No metabolically active lesions are noted in the abdomen.

Pelvis: No metabolically active lesions suspicious for tumor.  The subcutaneous metastasis in the right buttock has regressed significantly.  There remains metabolic activity present with the CT lesion.  SUV formerly 17.8 now measures 1.1

Skeleton:  No new metastatic lesions are identified.

Praise God...this is so much better than I could have ever hoped for.  Now, to go on my family reunion and start living! I leave in the morning and will be back next week!  I feel like I have won the lottery!

Thank you Jesus for helping me choose this path! 

candygurl

Kat,

God is certainly the God of breakthroughs.  Words cannot describe how excited I am for you, sweetie.  Keep walking with Him and  be sure to go somewhere special tonight and celebrate. You and your DH certainly deserve it.

Big Cyber Hugs and Miles of Love,   

Z

Proverbs 4:22
For they are life to those who find them, And health to all their whole body.

sweetbean

Yayayayayayayayyayayayayayayayayayayayayayay!  So happy for you!! 

KatRNagain92

Thanks girls!  I just so giddy with excitement and relieved beyond words!

sweetbean

Yes, I'm so excited for you! 

vespersparrow

Outstanding news Kat!

exbrnxgrl

I don't know about Jesus, being Jewish, but congrats ! Good news is always a reason for all of us to celebrate. Caryn