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Jane McLelland protocol / COC protocol for STAGE IV members ONLY

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  • Frisky
    Frisky Member Posts: 1,686
    edited December 2019
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    I hope she calls and all is well Nicole...

  • Frisky
    Frisky Member Posts: 1,686
    edited December 2019
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    I hope all turns out well for you Nicole....

  • nicolerod
    nicolerod Member Posts: 2,877
    edited December 2019
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    She never called....now Im just upset....

  • husband11
    husband11 Member Posts: 1,287
    edited December 2019
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    Praying for you Nicole. That has got to be just crushing.

  • nicolerod
    nicolerod Member Posts: 2,877
    edited December 2019
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    Frisky and Husband.... my doctor wrote to me at 1130pm last night...here is what she said...I am bit confused though......

    Hi Nicole - the bone scan looked clean (your bone lesions always seemed to come up ont he PET and MRI more commonly). The CT showed that the area of cryoablation is smaller as compared to early Nov, so perhaps the treatment that Dr. Georgiades did is fading a bit. I will ask them to compare the other liver lesions to the most recent CT and the PET as well because they didn't specifically do that yet.

    I am hoping to call you tomorrow, Tuesday. I apologize for not calling as I said I would on Friday - things got busy with the hospital service. I would like to have radiology compare some scans prior to talking with you so I can get a good understanding of what is going on. But so far things look great.


    What I am confused about is the "is fading a bit" does that mean the cryo is fading and there are live tumors under there or does it mean the whole are of cryo and dead tumor is fading?? I have been having sporadic pain where the cryo was done so I had a feeling there might be die off..but I don't know if that is cryo die off or cryo and dead tumor die off???

  • Frisky
    Frisky Member Posts: 1,686
    edited December 2019
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    Nicole, I hate to tell you, BUT option number three I gave you yesterday is the right answer.

    She has contrasting results that she’s unclear about and she’s waiting for the radiologists to investigate in depth and compare the scans to come up with a clear answer.

    She simply doesn’t know and was and is still waiting for the results of a in depth investigation....she’s a GOOD mo....doing her job well...

    She will report back as soon as she gets answers from the other departments....

    Relax, there’s nothing to do but to pray together, as we all wait with you, for a good outcome...


  • santabarbarian
    santabarbarian Member Posts: 2,310
    edited December 2019
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    THE LONGEST wait I ever had, which went about 7 days past when I *thought* I would hear a result-- which terrified me-- was ultimately GOOD news. They are VERY hesitant re any possible errors, when reporting any "news." Like, could this one scan be wrong? Do other scans confirm or refute the results that I seem to see here?

    I joke that the cancer treatment center in my town, which offers stuff like yoga, drumming circles, and watercolor painting for patients to help address their stress could get rid of all of those classes and simply BE FAST ON RESULTS in order to dramatically lower the stress of every patient! It is so galling to me that the results can be IN, and 2-3-4 people have reviewed them, and yet the patient is still in the dark... Like we are not grownups who are able to hear reality.

    I'm hoping things will clarified soon, and you'll get to talk to your MO later today and get your questions answered. The waiting is just horrible. I am glad she emailed you at least.

  • santabarbarian
    santabarbarian Member Posts: 2,310
    edited December 2019
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    OOPS wrong thread, apologies

  • nicolerod
    nicolerod Member Posts: 2,877
    edited December 2019
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    Thanks Frisky just gonna head to the gym to get my mind off this..and sit in the sauna while I still can before the Xeloda side effects kick in , in a week or 2 and prevent me from enjoying that...

  • husband11
    husband11 Member Posts: 1,287
    edited December 2019
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    the area of cryoablation is smaller as compared to early Nov, so perhaps the treatment that Dr. Georgiades did is fading a bit.

    I take the "is smaller" as indicating the cryoablation worked. Whether it worked 100% or not is unknown, but it worked.

  • nicolerod
    nicolerod Member Posts: 2,877
    edited December 2019
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    husband The tumors (both) were encased in one "shell" for lack of a better word...so my question is ...is that shell getting smaller and the tumors are still live or is the shell with the dead tumors all getting smaller and going away?? I did send a message in the portal to the IR that did the cryo...hopefully he answers...I have never really messaged him...

  • Frisky
    Frisky Member Posts: 1,686
    edited December 2019
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    so what's up...Nicole, did anyone get back to you?

    I had two impromptu visits this morning and my Japanese friend just left...

  • nicolerod
    nicolerod Member Posts: 2,877
    edited December 2019
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    Frisky, Sorry I have just been entrenched for the past half hour with the metro map and changing some things up after a recent consult...my brain literally feel fried....like shot...exhausted.

    I called the IR office and asked about that smaller area. I got the NP she said that all sounds positive that its good its shrinking and she "believes" it the tumors were dead the minute they were cryoblated. She said for me to get the disc and send it to him to review so I will do that Friday when I go for my first Xeloda - Blood work. My MO hasn't gotten back to me but I am not expecting her to (even though she said she would) I know she is swamped and at this point Im thinking no news - good news... took me a day or two to get there but I am there now..lol

    Oh I have made 1 big decision ...once I have the blood work results the first med I will add in will be the Fenben/Mebedazole. And that will be taken with the chemo and the IVC . Then a couple of weeks later..probably the doxy. I am not taking the Doxy with chemo so I may leave the doxy out...there is a supplement to use in place of that anyway. After that the Propranolol then the Low Dose Naltrexone....

  • BevJen
    BevJen Member Posts: 2,341
    edited December 2019
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    Nicole,

    First, when I had my microwave ablation done and went for my three month checkup, even the IR who was doing her fellowship didn't want to read the MRI. She said that it's "tricky" to read a scan after ablation. So the actual IR had to read it. He said that it looked appropriately treated, and that the circumference was going down (aka getting smaller.). When I had my most recent CT, I alerted the radiologist that I had had the ablation, and he measured again, and said that it was smaller still. I think that that's what your report is referring to. I think your MO probably isn't that familiar with what these things look like on a subsequent scan. I would get the disk, but I don't know if she will be able to read it. Ask her first how many patients she's had who have had ablation of any sort.

    FYI, after my ablation, my alkaline phosphate numbers were elevated for a little bit. Now they are well in the normal range. When I have my MRI this Thursday, I expect that the area will look pretty much healed. It takes some time. I am 5 months post ablation now.


  • nicolerod
    nicolerod Member Posts: 2,877
    edited December 2019
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    Thanks Bev..I am getting the disc for the IR so he can see it ..sorry I sounded confusing there. lol Thanks for that info!

  • Frisky
    Frisky Member Posts: 1,686
    edited December 2019
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    Nicole I think it’s safe to rejoice....bad news would have been apparent by now...glad you have a plan about how to deal with COC...and xeloda...

  • nicolerod
    nicolerod Member Posts: 2,877
    edited December 2019
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    Success Story with Janes protocol BREAST CANCER!!!!

    #Positive progress#. I have metastatic breast cancer ER positive Her2 negative. Multiple mets to my liver and 4 th vertebrae. I was Diagnosed March 2018 I was initially given 7 weeks iV chemo paclitaxel, I then went into a crisis and I was told I had a few weeks to live. I could hardly walk, I couldn't even lift a jug of water and put it in the fridge. I had accepted death.
    My treatment was changed to Palbociclib 75 mg and Letrozole and I stabilised and towards the end of that summer regained a little strength.
    In November 2018 I read Janes book, I was totally blown away by what I read. Please read this wonderful tool several times. Use a highlighter pen, re read it until understand it as best as you can. I still don't understand it all but I can adopt a metabolic approach which can be done alongside your NHS treatment. You definitely won't understand what's going on on this site until you have read the book. Make sure you read the summary on page 375. I fear a lot of people give up before they even get to this page and when your feeling ill it's hard to get your head around, but it's so worth it!!!
    My tumours markers are 11 ( CA15-3) which is normal and my latest scan is stable ( previous scan there there has been shrinkage). Everyone thinks I am cured and I feel amazing, I live life to the full and travel abroad as much as I can. I am not cured, yet, but confident that this metabolic approach is working.
    I go to Care Oncology Clinic and I follow a low glycemic diet. I do intermittent fasting I excercise after meals . I take lots of off label drugs , and loads of supplements and pay attention to my gut health.
    I also try to block every pathway as I have a stage 4 diagnosis. Reading Janes book has been my life line. I have a future and I have hope. Thank you Jane you are the most amazing person. My message to anyone with a cancer is READ THE BOOK, there is so much you can do.

  • nicolerod
    nicolerod Member Posts: 2,877
    edited December 2019
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    WHOOO THIS IS JUST THE BEGINNING!!! LOOK OUT STAGE 4!!! We needed this story!!!

  • Frisky
    Frisky Member Posts: 1,686
    edited December 2019
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    Thanks NIcole, we need to read these testimonials to stay positive and focused on the complimentary course...may everyone benefit from Jane's wisdom..

  • husband11
    husband11 Member Posts: 1,287
    edited December 2019
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    That's an awesome inspiring story.

  • nicolerod
    nicolerod Member Posts: 2,877
    edited December 2019
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    ThumbsUp

  • nicolerod
    nicolerod Member Posts: 2,877
    edited December 2019
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    MO called...I love her..lol So she said the radiologists there are probably not really familiar with what things should look like from the cryoblation..bc my IR had encased 2 tumors in 1 dome>(for lack of a better term) so they listed it as the 2 tumors are now 1 big tumor..but she compared the CT I had the week after the cryoblation (from the pain I was having when they made sure there was no bleed) and she said you can clearly see that it looks the same as that but smaller. She wants me to do what the IR's nurse said to do today upload the disc to them and just have him confirm. She says Nicole..your bone mets are strange they just do not show up at ALL on bone CT they do not behave like normal mets...lol She said in the future we will probably PET to see them (even though 1 didn't show on the PET either...) or we will MRI it (that is where they show) She said otherwise things are very good. She also agreed to allow me NOT to continue with Zometa!!! YAY..my pitch about that was that it doesn't prevent metastasis and that I feel it's better for people with wide spread and painful mets so she agreed and said we will keep that in our back pocket.

    She told me that my creatine was probably high from the Xeloda bc it is processed in the kidney but that when I get bloodwork this friday we can look at that. ..... I am just concerned bc if my kidneys have already have high numbers and I had some pain in my kidney that one night etc..I worry that I wont in the future be able to do chemo...and yes...I actually want to hit this hard one day with a taxol because I "think" its what will definitely work. Im just talking out loud here..lol sharing with you all...

    The only thing I didn't tell her but will at the appt on the 26th is that I feel we (I) would respond best to a Taxol.... not Xeloda...but we will see.....





  • Frisky
    Frisky Member Posts: 1,686
    edited December 2019
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    Nicole you are very courageous to think taxol, my mo recommended that for me, but I simply don't have the strength to even contemplate it...I know, however, that is one among the various chemos known to kick ass...it's first and foremost an anti fungal....that's why...they got that one right

  • nicolerod
    nicolerod Member Posts: 2,877
    edited December 2019
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    I should have mentioned...when I went to my 2nd appt ever with my MO we talked about what my next line of treatment would be since the Ibrance failed...and she said either Xeloda or a Taxane chemo but that it would definitely be a chemo...and she told us the pros and cons of both of those...and she was leaning towards the Taxol...and ya know what ..I was too. With that in my memory I am definitely gonna bring it up in 2 weeks.... Then if I knock the crap out of these tumors..then I maintain and keep the CSC's from coming back with my map!!! I feel like I need to do this NOW while there aren't that many of them.

  • husband11
    husband11 Member Posts: 1,287
    edited December 2019
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    That is great news Nicole. Praise God.

    I read today that a generic Everolimus has been approved. That is great news for those who can't afford the name brand. It also might mean that in Canada, they don't have to be so stingy with it, if it costs less. Right now they are limiting patients to one and only one targeted therapy, ever. Because of costs.

  • JFL
    JFL Member Posts: 1,373
    edited December 2019
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    Nicole, glad you finally heard from the doctor and that it appears to be a good scan result based on what your MO said, although I have no idea what the "fading" description could mean either. Scans are hard to interpret after local treatments and sometimes the treated, dead tumors do not fully disappear, but just remain there, dead, at least in part. It sounds like your MO was doing her homework looking to consult with the IR first.

    It is so unfortunate that this is all a crapshoot whether any of these supplementary meds we are taking actually has a positive impact on our cancers and if so, which meds in which combinations. Jane seems to be doing a great job but her success seems to be pretty much trial and error with a few doses of good fortune thrown in the mix.

    So my MO's office called and told me he had an unexpected emergency and is out of the office all week. I hope everything is okay. I would have assumed he would be at the conference anyway this week. I am a bit worried about him. In the last 6 - 9 months, he has lost a significant amount of weight although he was thin to begin with, his hair seems to be thinning and he looks gaunt. I wonder if he is going through his own health issues. I tried to get the scoop from the various staff at the hospital out of concern for him but everyone was tight lipped. I hope he is okay.

  • nicolerod
    nicolerod Member Posts: 2,877
    edited December 2019
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    Husband can you please link me to the Everolimus article..I would like to send it to my MO

  • nicolerod
    nicolerod Member Posts: 2,877
    edited December 2019
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    Thank you ...so I take it that use to be given via Port IV?? Sorry I just don't know anything about that drug?

  • husband11
    husband11 Member Posts: 1,287
    edited December 2019
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    Everolimus is an oral drug. It's typically taken along with an aromatase inhibitor. I think the testing was done with exemestane, a steroidal AI.