Mar 20, 2012 08:54AM mnmom3 wrote:
Good Luck, hope it works
This forum is a safe, judgement-free place to discuss Alternative medicine. Alternative medicine refers to treatments that are used INSTEAD of standard, evidence-based treatment. Breastcancer.org does NOT recommend or endorse alternative medicine.
Posted on: Mar 20, 2012 08:11AM
Well, if anyone is interested in charting my progress, I'm going to post it here. I have stage IV with distant mets to lymph nodes. I can palpate 3 out of the 10 nodules that I have, so my husband and I measured the most prominent one on my back: 1.5cm in length and 0.5cm height. I took my initial dose this morning at 0600.
I had my ovaries removed last Friday, and the plan is to initiate Aromasin and Afintor asap...but my next scheduled Onc appt isn't until April 12th so I want to take full advantage of that time. If I am showing progress in 2 weeks to a month I will be doing cartwheels down the street. If there is none, then I will concede and go with the recommended treatment. I want this to work so badly!
You can read more about by googling 'outsmart your cancer'
Posts 1 - 30 (143 total)
Mar 20, 2012 08:54AM mnmom3 wrote:
Good Luck, hope it works
Mar 20, 2012 10:15AM mkkjd60 wrote:
I've been reading about this. Hope protocel works. Let us know!
Mar 20, 2012 12:00PM ibcmets wrote:
Good Luck with this treatment.
Mar 20, 2012 09:08PM pooka wrote:
I just heard about this treatment too. I hope it works. Please keep us posted. Good luck.
Mar 21, 2012 06:58AM KatRNagain92 wrote:
So far it's a very easy treatment to follow. The biggest road blocks are carrying around two 5 oz pre-mixed doses but you can get around that. No signs of 'lysing' yet (white mucousy discharge from any or all orafices) Fast growing cancers lyse more quickly than slow.
My husband even woke me up last night at 12:30 to take my dose. And this is coming from the man who thinks the next cure I come up with will be hanging owl beaks over the bed. lol
The other consideration is my diet. I have to alter it now somewhat. It's not that they want you on a no carb diet, but that would be ideal because you need to avoid glucose and vit C. Whole grains are okay but foods that really pack a whollop of Vit C should be avoided. So now, I'm leary about fresh fruit in my cereal and my broccoli in the afternoon. Another thing to avoid is resveratrol, so no more glass of wine at night? Acck!
Well...on to day two. You do drink a lot of water (and distilled water too)
Mar 21, 2012 12:53PM - edited Mar 21, 2012 12:53PM by sandilee
"who thinks the next cure I come up with will be hanging owl beaks over the bed."
What a great sense of humor your hubby has. Sounds like a keeper.
Good luck, Kat. This sounds like something you have to do for yourself before you "submit" to the established protocol. I hope you get an answer, one way or another, if this is working for you.
Apr 1, 2012 09:32AM KatRNagain92 wrote:
Well today marks my 13th day on this treatment. I am doing very well...my hair is growing back from my token effort at chemo (3 treatments total of Taxol) and I think the protocel 23 is truly working. My nodule to the left mid back has changed in size as well as consistency and pain associated with it. It used to be more tender to the touch but now that has minimized to just ‘you can tell something is there' This morning it measured 1cm by 1cm. This is shorter than the first measurement but also taller. It is theorized that tumor size is likened to an ice cube melting. The puddle of water the ice cube leaves is potentially why there is a change. The other 2 nodules I can feel (a pea size one on my R reconstructed incision line) and a deeper one to my right buttock (upper/outer quadrant) feel firmer and maybe a little smaller but it's hard to tell (and hard to measure with conventionaltape measure.)
I'm keeping an excel spread sheet on my symptoms of lysing and the most predominate sign is fatigue. Intense fatigue to the point where even sleep does not resolve it. However, I still have energy when I first wake up in the morning to get dressed and go about my day. I've also experienced increase in urination and maybe just small amounts of mucous on my stools. One of the more exciting signs is ‘pins and needles' feeling to the area...however, I've really only experienced this one time but it was significant enough that I realized what it was. I want more of that feeling! (Pins and needles could be indicating the shutting down of energy in a cancer cell)
I also came across some advice for lysing in the lymph nodes. When the lysed material (similar
to egg whites) is moving through the lymph track, it has a tendency to be sticky and slow... I read online to get one of those mini trampolines and do some gentle bouncing for 10 minutes a day. I put out an APB to find one and it's amazing how many people have those laying around in their attics...so I got one the next day and started bouncing away. It feels good and I'm optimistic it's going to move it on and out!
The best thing about Protocel so far, is that I know I look healthy. People stop me and say I don't even look sick. And truthfully, sometimes I forget it myself... which, at the end of the day, is more than I could hope for!
Apr 8, 2012 09:43AM KatRNagain92 wrote:
Easter blessings are shining down on me today as I report on
my Protocel Progress...20 days later. It's not as fast as I would like but I am respecting the process. Maybe it's the ‘watched pot never boils' syndrome but I find myself constantly feeling for the pulse of the cancer and what my body may be telling me at any given moment. ...and all this week it's been telling me that it's waxing and waning.
Today's measurements of my Left Back Nodule are: 1.25 in length and 0.75 in width. (The puddle theory) The depth and density are also much thinner and firmer. We're going to pick up some calibers for next week...my husband has a hard time finding the borders so he feels maybe the measuring is skewed. My other palpable (albeit non-measureable) nodules are also showing signs of shrinking (R reconstructed breast at the cleavage/incisional line and the R upper quadrant of my buttock in the deep tissue)
The most significant sign of lysing is that my ears run like crazy. That is the wildest thing....especially at night. It doesn't block them, like you've been swimming, it just feels like they're draining...My nose runs too...not as much though as my ears but I feel this sensation approx. an hour after I take my dose. I've also experienced crusting around my eyes and the pins and needles to the general area of my cancer. I can't truly identify which activity is what inside my chest wall, but something is going on.
Staying on the dosage track is very easy. I'm pretty much dosing at 6am, 10am, 3pm, 8pm and 1am. I'm keeping the amount at ¼ tsp, however, that one 4 hour span in the morning could be considered a power dose only because of the timing but it gives me more energy and I'm able to get things done. I feel like my stomach is most empty on these times. I have taken it with food but I don't want to make it a habit. The literature says they know it works with food because it works on pets because they have to take it with their food...Nonetheless,I would like to give myself every advantage of the empty stomach. (And lots and lots of water)
I'm preparing for my meeting with the Oncologist on the 12th. I'll document on my spread sheet up through that day and then print it out for my ‘portfolio presentation' I'm going to give her. She thinks the appointment is all about starting the combination Aromasin/Afinitor... however, I'm going to come armed with compelling evidence. I want her to continue to be my physician, to support me, to partner with me and share in my celebration as I (we) beat this beast in a non-toxic way. "First do no harm"
Once, I asked her..."Have you ever heard of Protocel?" Call me crazy, but I was searching her face and her eyes flickered with a knowing look. Did I read too much into it? What if she saw this opportunity with my diagnosis? I have presented to so oddly with my recurrence...the fact that the cancer is spread to cutaneous lymph nodes is not a typical metastasis of breast cancer. I want to believe she gave me the standard of care 3 doses, knowing she did her ‘due diligence' with the conventional route. I think she picked up on a few aspects of my personality, knowing I wouldn't be one to follow the herd.
So, come Thursday, I'll get my labs drawn we'll marvel at how good they are. Then, I'll plea my case and request to schedule my port removal. I would love another scan, but I think it's too early. It's only been 5-1/2 weeks. But having the port removed this month will greatly improve my golf game! And if I'm honest with myself...what do I really need that thing for anyway?
God is Good!
Apr 8, 2012 03:11PM - edited Apr 8, 2012 03:12PM by CoolBreeze
Good luck with it. You know that treatment is listed on Quackwatch right? It has been around for 30 years and hasn't cured anybody.
I know being listed on sites like that doesn't stop alties, but I sure hope that you are going to do your regular conventional therapy too. I'm glad you are seeing your doctor and I hope she has good advice for you.
Apr 8, 2012 03:31PM Chickadee wrote:
Kat, we are not "the herd". Perhaps you would be more comfortable in the Alternate thread.
Apr 9, 2012 12:38AM cheery wrote:
Kat posted in the Stage IV Affinitor Thread that she did Taxol for several months with no success. Her doc has since recommended Affinitor with hormonal therapy.
She's now using Protocel 23 prior to seeing her doc on the hormonal therapy.
Thanks for taking the initiative to share your experiences on Protocel 23. As some ladies here have said, there are two dedicated threads, namely Complementary and Alternative Treatments, which might be more appropriate and facilitate further discussions on Protocel. There are a few of us Stage IV who frequent there too.
Apr 9, 2012 07:22AM - edited Apr 9, 2012 08:18AM by KatRNagain92
Apr 9, 2012 08:51AM pbebow wrote:
Kat! Rock on! You go girl! Don't let any doubters bring you down!!!! Sounds like things are going great and you are documenting everything and seeing your doctor! Can't wait to hear what she has to say!!! Sorry about the brocolli and berries, but I know you'll do what needs to be done! Love you girl!!!!
Apr 9, 2012 03:58PM KatRNagain92 wrote:
I've asked the Moderators to move me to the Alternative section. My apologies for posting this in the wrong place. I'm not sure how long that will take...Someone mentioned 'jointing it' so maybe I can figure out how to do that.
My intent and my motivation have always been the same. To journal my progress with accurate documentation (of the good and the bad) as well as weekly measurements. My hope and prayer is that when I am cancer free, my story will only serve to strengthen Protocel's position as a viable option in the ongoing battle to finding the cure.
According to conventional medicine, the response to treatment is defined as tumor regression that lasts 4 weeks. I have completed 3 weeks of alternative therapy and can safely say that I have had tumor regression that has lasted 3 weeks. Baby steps...I've got a lot of cancer.
Again, Happy Easter to all!
Apr 10, 2012 10:03AM - edited Apr 10, 2012 04:56PM by pbebow
Apr 10, 2012 11:31AM Chickadee wrote:
When she felt the need to state that she wasn't one to follow the herd then it became something other than simply sharing her journey. That implied that those choosing conventional treatments give little thought to their choices. Moving it to the alt forum is more appropriate.
Apr 10, 2012 02:02PM KatRNagain92 wrote:
Paula, please don't do this....it's okay. I don't want to have a problem. I'm just waiting patiently for the mods to move me. I shouldn't have posted in this forum in the first place.
It's all good.
Apr 10, 2012 02:14PM PJB wrote:
Kat, I hope your regimen works well for you - and that you give whatever else a try when you need to. Hugs and good karma...
Apr 10, 2012 05:39PM KatRNagain92 wrote:
Thanks Mods for moving me and thanks to all the well wishers! Paula, I love you and thanks for going all Mama Bear for me. (We both hail from Team January and have held hands from the start.)
I have good feelings that this will be a kinder and gentler way to post! :)
I'm anxious about my Onc apt. Thursday. I truly have the highest regards for her, and I would very much like for her to follow me through this journey...however, I am prepared for a parting of the ways. I have a plan B, so no worries. Mostly, I'm nervous about telling her "No" to 7,000/month for an off label in-house retail pharmacy med. I guess they've got all the approvals from my insurance for the Affinitor and just waiting for me to pay my copay and pick it up. (They shouldn't have made it up ahead of time)
I did buy a geometry math kit with protractors and a clear ruler....it's so much easier to measure now. A crude measurement of my R medial breast at 3 o'clock is a diameter of 1cm x 1.25cm. The nodule on my back measures this morning of 1.0cm x 0.8cm. But I don't want to enter that one in as an official measurement since it's not on Sunday.
I'm also encountering messing dispensing towards the end of this 8oz bottle. I'm ready to break in to my new one, but I don't want to waste a drop! Maybe I'll keep the last of it on stand-by in the event I spill my good bottle or something. I've found that it takes 2 days to get my supply from vitamindepot.com (and they include a dropper which is nice) The other site that outsmartyourcancer.com recommended didn't have a secure server so I chose this one and so far so good.
Best of all, I feel great and people keep telling me over and over, how healthy and vibrant I look.
I'm so encouraged...
Apr 10, 2012 05:41PM lrr4993 wrote:
Kat - I noticed this thread days ago but did not post because it was in the Stage IV forum.
Everyone has to choose their own path in dealing with this disease and everyone deserves respect and support in their choice, whatever it may be. Some choose conventional treatment. Some choose alternative treatment. Some choose a combination of the two. Some choose no treatment.
As for the "herd" comment, it is obvious that you were commenting on your own personality - as one who tends to take the path less travelled - and not attempting to degrade the choices of others.
I read about Protecel when I was first diagnosed and was curious about it. I am interested to see how it works out for you and wish you complete success with it.
Apr 10, 2012 08:29PM - edited Apr 10, 2012 08:44PM by Heidi207
Kat - After doing my own research and hearing your story I'm encouraged to give the Protocel a try too. I thik I'll order tonight and get a head start - surgery for bi-lateral is scheduled April 20th. Good luck to you girl! Keep the faith and the positive attitude!
Apr 10, 2012 11:50PM luv_gardening wrote:
Welcome to the Alternative Treatment thread Kat. I've wondered why Protocel was never mentioned and now we can all benefit form your experience thanks to your generosity. Don't let the doubters put you off.
Should the Protocel stop working after a while, or should it have failed, it would be no better or worse than any single chemo. And chemo would still be available to use. I wonder why alternative treatments are subjected to unrealistic expectations when standard treatments are no better? If standard treatments in general fail in the long term, why would anyone deny themselves the possible benefits of other treatments? Why would any oncologist knowingly offer treatments that are bound to fail in the end, yet deny us the right to try non standard treatments? I ask myself these ethics based questions every day.
Apr 11, 2012 03:42AM cheery wrote:
Most important thing is, keep close monitoring and I hope you're able to do scans while doing this regime. If you find it isn't working anymore or get bored, you can always falls back on chemo and/or hormonal therapy.
Good luck with this!
Apr 11, 2012 04:23AM Heidihill wrote:
For this reason (cheery's post above) I would keep the port!
Fingers crossed for you!!
Apr 11, 2012 08:14AM KatRNagain92 wrote:
Thanks Lisa for accurately verbalizing my 'herd' comment...that's exactly how I intended that comment to be. It also makes me sad that you can't post that in the stage IV forum because (Praise God) you are a Ib. That makes no sense to me at all. Are we not all equals by having this horrid retched disease?
If Stage IV had the potential to have an A-Z rating to it, I guess I would consider myself a Stage IVa :) I updated my biography so that ladies can see that I have been through conventional western treament and it failed. I also just don't see me keeping my port. Truly, what would they use it for? I'm not interested in anymore chemo infusions. The oral drugs they want to give me are chemo in a different form. I guess if I ever needed a blood transfusion it would be easier to do that so I'll consider that.
Good luck Heidi and good luck with your BMX. Everyone has to do their own research to determine if it's right for them. I would assume it can only help with your surgical recovery but keep in mind that your range of motion is going to be compromised so make sure you have someone who can vigorously shake the bottle for you prior to every dose. The 16oz bottle is a better value (by about 5 dollars) but I think the 8oz bottles are easier to physically manage and store. And the biggest piece of advice for your post surgical time period is to avoid all Vit C and refined sugar and keep a positive outlook!
I'm pretty excited today because I've had a great sign of lysed material! Yesterday I increased my activity level like ten-fold. I started with a 2.5 mile power walk at 0'dark hundred and then was just non-stop, cleaning, cooking, etc. etc. I laid down for 1 hour but really only rested. This morning, I had a whole lot of mucus in my stools. More than I ever have before. Whoohoo!
I also have shin splints from the power walk so I'm going to decrease my activity a little today with shopping for new grandbaby furniture! :)
Oh, and Joy...I think I may use your signature quote as my opening line at the presentation tomorrow! Thanks!
Have a great day ladies!
Apr 12, 2012 03:02PM KatRNagain92 wrote:
Good news at my onc visit.
She, of course, is against what I'm doing but she can't deny that my lumps are shrinking. Especially the one on my buttock that used to be the size of a grape and is now the size of a small marble and the one I've been measuring on my back? she had a hard time finding it.
She had no interest what-so-ever in taking my excel spread sheet documentation for my chart but she did agree to continue to keep me as her patient. She wants to see me in 6 weeks...no doubt to be able to say, 'see I told you so' but she will have a hard time saying that next time because seeing will be believing.
My labs were stellar and she asked me about my diet. Which I told her is well-rounded with whole grains, nuts, animal proteins, fruits (not too many) and vegetables and that no refined sugar passes my lips. That might be hard for some, but I've never had a sweet tooth so it's not hard. I'm also drinking about a half of gallon of water a day.
She asked me what exactly is this Protocel? And I told her that it was a powerful antioxidant, however, it's not the antioxidant properties that are killing the cancer..it's the protocel's ability to interfere with the ATP/energy producing abilities of the cancer cells. Since cancer cells are anaerobic (meaning they fuel up by fermenting glucose) and healthy cells are aerobic meaning they use oxygen for to survive, turning down the electrical voltage of all the cells makes the cancer ones literally fall apart. This small adjustment in the energy flow to the healthy cells does nothing to them, therefore they go unharmed.
Then she says, well, what about the ones in your chest wall nodes that you can't measure? I told her that I get frequent sensations like little jolts of pins and needles as though the energy of the cancer is bzzz, bzzz, bzzz like it's fizzling right out.
She's not convinced but that's okay. I am, and that's the important thing! :)
She doesn't want me to remove my port just yet and she's anxious to scan me. I just had the one less than 6 weeks ago so she agreed to go 3 months from now.
I also, ironically, got a call last night from someone who works for the manufacturer of Protocel...she knows about me from my recent purchase...as a matter of fact, this gal knows the Sheridan family and they are collecting data from those who are buying it all over the country. She said she'd call me in another 6 months to see how I'm doing. I think it's awesome that the makers of Protocel are taking all this initiative to position themselves to start spreading the truth!
I'm so happy to be a part of it!
Have a great day!
Apr 12, 2012 04:55PM sweetbean wrote:
Amazing - thanks for keeping us posted!
Apr 13, 2012 02:08AM cheery wrote:
Thanks, Kat for the update.
And congrats on doing so well. Please do continue with your scans as I think it's great that you're being monitored closely.
Apr 13, 2012 07:14AM KatRNagain92 wrote:
Me too Cheery!
It was scary there for a moment because despite how confident I am going forward, I'm still an infant cruising the furniture and I (and my husband) need the support. Once I'm 'walking on my own' I'll be better equipped I think. :)
Apr 14, 2012 02:07PM Heidi207 wrote:
Great news on your last visit! I received (and started) my Protocel yesterday. Hope it works as well for me! Pleasekeep sharing and getting better.