Jane McLelland protocol / COC protocol for STAGE IV members ONLY
Comments
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Simone my concern also is that I will technically only have 3 weeks of the oral chemo in me when I scan...since its 1 week on 1 week off.... I just feel like how can that possibly be enough chemo/time in me 3 week and see if its working
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Nicole,
Good point. 6 weeks doesn't seem long enough. Did your MO explain why 6 weeks instead of 12?
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Nicole, I agree, you may need longer on the medicine to make sure you give it enough time to work.
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My MO is afraid to wait any longer than that...because IF those tumors grew in only 2 months what will happen in another 2 months? Some people say that the oral chemo keeps working in the off weeks...but I don't know...?
I guess my big dilemma is if it fails do I go to Doxil...or Paxitel....I just don't know what to do...I am sooo sooo torn...I feel like I just cannot decide which one...
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Take a look at my old post on oil of oregano and my wife's experience.
It must not be taken with other drugs. It is highly prone to interefering with drug metabolism.
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Thanks Husband...looked it up.
Has anyone tried Astaxanthin.....
I am ordering this one... https://valasta.net/product/valasta-oil/
Any thoughts?
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That looks very interesting Nicole. How did you learn of this? The "petri dish" and rodent studies are certainly promising.
Breast cancer cells in vitro: proliferation and migration halted
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC62106...
Does an anti oxidant interfere with chemotherapy? An in vitro study with astaxanthin and breast cancer says no.
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Everything and everyone that I have read about on it...while on chemo says it does not interfere..but...ya know I am worried about the "anti oxidant" aspect... sigh. I heard about it though a friend (nothing to do with breast cancer) ...the other intriguing thing is that it is HIGHLY effective against PDL1...and I have that mutation.
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UPDATE....
The MO just called. Since the radiologists did not have an MRI recently to compare they only have the PET so she wanted the IR to have a look and he did.
The IR said the cryoblated area looks good and as it should. He thinks after looking at all scans that the 2 tumors (1 that he didn't cryoblate and now the one right next to it) have grown and he would feel better if I moved on to IV chemo... he said he could do TACE but it can be very painful (as you know BEVJEN).. My MO prefers chemo IV...so my decision now is whether to get the IV Chemo Doxil or Nabpacitaxol.... or to stay on the Xeloda for 7 weeks...even though now I have been off it for 2 weeks...but re started today.
I am just so torn.
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Nicole,
So sorry to hear your update. I'm not sure what to say. I would want to squeeze as much time on a drug as possible but yet wouldn't want my tumors to grow more. I see you're grade 3 so those little buggers will grow fast. Maybe someone who has taken those chemos will chime in.
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Thank you Simone...right now TODAY....I am leaning towards giving the Xeloda the 7 weeks...because:
1. I want to try adding the Oil of Oregano (like Husband11 wife did)
and
2. I also just ordered Astaxanthin and want to add that....
I need to pray about this....hard...because I need our Heavenly Father to close the door on treatment He doesn't want me to do and what He does...and I believe that He does and can use other people to lead us where He wants us to go...and I am praying that with all of you He is going to help shed some light for me. Even if I do not do the Xeloda or I do for the 7 weeks...I still will have to choose between the doxil or the nabpaxitel....
Thank you so much for the PM's from Saulius!!!
JFL would love to hear your thoughts....
Also hoping that Cureious will chime in too...
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You are in my prayers Nicole. And yes you are so right, we need God to guide our decision making, to help us make the right choice. Can you remind me how long you had been on xeloda prior to the imaging that showed the second tumor? Obviously you need to determine whether the xeloda was working or not, and that will to some degree depend on how long you were on it prior to the scan that showed things worse than the last scan. Did the pet scan give any feedback as to the uptake in the second tumor?
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Husband11...thank you so much for holding me in prayer! Ok so my report has not been uploaded to portal but I will let you know uptake as soon as possible. Heres the thing.... Lets leave the 2 tumors that were cryoblated together, out of this.
With that said that leaves 2 tumors:
October 2019 - PET (this PET had let them know that I had growth while on Ibrance and stopped Ibrance) They reported to have seen 4 tumors in liver. (2 of those I then had cryoblated)
December 2nd, 2019 started Xeloda
December 4th, 2019 - CT Bone and CT Liver this only shows 1 tumor not 2. (My Bone Mets do not show on CT or Bone CT either)
We now know the other tumor WAS THERE on December 4th they just did not see it on CT Scan either it didn't show or was too small to see on CT. They saw it on October PET and on February 2020 PET.
NOW:
- 1st Tumor we know was left there when I had cryoblation (and from the beginning when originally diagnosed) that one got bigger.
- 2nd Tumor (or 4th if you count the cryoblated ones) grew from OCT. PET 0.6cm to now 1.0cm
Our question was: did they grow from Oct to December when I was not on any medication?? Or did they grow on Xeloda (started in December)???? My MO spoke to the IR last night and he feels they most likely grew on Xeloda based on looking at all the CT's PETs MRI..etc.... don't ask me why he felt that but he did.
One more thing...I don't know why ppl say that MO's don't admit when chemo fails it comes back with a vengeance and that MO's don't admit that chemo doesn't kill stem cells...Mine does. She said to me at the meeting Friday... I said "why if I get NED on Nabpactaxol can't we stop it and just do nothing and see if the cancer comes back why do I have to stay on it till it stops working?" she said "because when the cancer comes back...it does so with a vengeance"..... and when I first consulted with her...I said "I want to do some alternative therapy with conventional because chemo does kill cancer but it does not kill cancer stem cells"...and she said ..."correct".
So as soon as I get the uptake info I will let you know....
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Nicole, keep in mind that chemo not only doesn't work, otherwise they wouldn't have a 98% fail rate, but it will destroy whatever is left of your working organs: kidneys, liver, gallbladder, and must of all YOUR BLOOD....making it hard to want to live as those problems greatly affect your QOL. After 4months on doxil my skin was dropping off leaving open wounds....you can't make this stuff up! This phenomenon happened also to Shetland after just 2 sessions...I rest my case...
I was on a reduced schedule of Navelbine, but I nonetheless find myself with hemoglobin at 7, it should be 14!! At 7, you will feel as if you belong to the other side...
It's a cruel disease, but the “cures" are worst than the disease....catch 22
I hope God guides you well, but it's ultimately a crapshoot, mos don't have the energy to recommend medications because they know it doesn't make any difference whatsoever!
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Frisky, I am sorry you feel horrible that really stinks I hope you can find an better treatment. I have to say your post sounded very negative and I just can't go there right now. I have to be honest not everyone has the issues physically way you do right now. I have actually met many many women in the past 2 days that have zero issue on Taxol...not even Doxil..but Taxol...they actually said aside from their hair falling out they felt a little tiny fatigue and that was it.
I believe all our bodies are so different and some people do very bad and the easiest drug and some do great on the hardest we just never know. Look at me ...mebedazole sent my ALT and AST through the roof..and yet others don't even know they are on it...I seem to be great on Xeloda and yet some people have massive hand and foot syndrome.
I also believe that we need Conventional therapy with unconventional therapy. Chemo kills cancer there is no doubt about that its a fact that doesn't mean it NEVER comes back because it can and will....what it doesn't do is kill cancer stem cells. thats how it comes back we need to kill the stem cell (which is what causes metastasis) hence> alternative off labels. As far as MO's recommending stuff...I picked a Medical Oncologist NOT a Naturopath....so of course she is going to recommend the conventional therapies that are commonly used to treat my cancer that is her job and what I expect her to do...I don't get upset or mad because she is not recommending some alternative therapy to me...the most I do is share with her what alternative therapy I want to do and hope she is in agreement. I happen to love my MO and I believe she wants to save my life if I felt any other way I would get a different doctor...and if you feel that way you should look for a new doctor one that you feel is fighting WITH you and FOR you.
Everyone should try to get that and stop at nothing less.Even though I know you are doing conventional therapy it sounds like you don't believe it works. If you think conventional therapy is making you feel that awful why not just try unconventional/alternative therapy? I know you have done a lot of research on that with Jane & Joe's books etc and natural herbs etc? That route might work better for you? Either way I hope you feel better.
I don't want to hijack the thread so please feel free to pm me
PS if you haven't yet you should look in the the powerful antioxidant I mentioned a few posts above
Could be a game changer for you 0 -
Nicole- In your comment you indicated you have PDL1 expression? How do you know that (Foundation One, etc?) and PD1 expression is also high? If so, I would want to include an immunotherapy with the chemotherapy, because if you are a responder it could make a large difference in the response. What does your MO say about adding Keytruda?
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Frisky, you are also in my prayers every night!
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Thank you Husband...I'm going in for a blood transfusion soon...
Nicole, I wish you and everyone well, and I agree with all you've stated BUT 98% fail rate remains a fact, and I believe that as we fight to stay alive, it's important to look at the reality of the situation, since my predicament is actually very common, Divine went in for a blood transfusion yesterday and everyone else is going in and out of emergency rooms.... just saying....
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Curious...I have the PD-L1 expression it was on my original (and only ) foundation one report from April 2019. My MO and I have discussed trying to get into immunotherapy trials based on that and I just today sent her a list of trials I would be eligible for that I got from The Cancer Research Institute...
Curious I will PM you...incase you don't check back here...but if you do...when you say ask her about "adding" keytruda...do you mean to Doxil and/or Nabpactaxol (which ever we do)?
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Ok husband11 here it is...:
Hypermetabolic anterior right hepatic lobe mass perhaps increased in size approximately 2.1 x 1.8 cm previously 1.7 x 1.2 cm (3.7 x 2.3 cm on 12/07/19). It has maximum SUV 3.0 probably decreased extent and similar intensity. Previous adjacent focus not seen. Inferior right hepatic lobe mass increased in size 2.3 cm in transverse dimension previously 1.4 cm (1.8 transverse x 2.4 cm AP on 12/07/19). It appears more intense with maximum SUV 4.8. Anterior and just superior to this mass, there is a new mild hypermetabolic focus maximum SUV 2.4, liver parenchyma 2.0. This probably corresponds to 1 cm hypervascular lesion on today's MRI.
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Nicole, sorry to hear about needing to switch treatments. I responded in the liver mets thread to your question about what others would do if they had the choices you have, based on my experience with Abraxane (nab-paclitaxel) and Doxil.
Curious raises an excellent point about Keytruda (with either chemo) or possibly Tencentriq (with Abraxane) given your F1 results. These can be given off-label if insurance will approve it
OK, I am now going to check out the info/links you posted on Astaxanthin now! I haven’t heard if that one.
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Thanks JFL I replied over in Liver Mets..but thank you so much for giving your opinion about that you would choose Doxil first. Wondering if you choose that over a combo (like curious) mentioned?
Yes the Astaxanthin looks to be very good...and it specifically targets PDL1
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Nicole, can you ask the oncologist about interpreting the uptake SUV values on the pet scan? Can anything that remotely resembles a response to xeloda be gleaned from that description?
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Nicole,
My PDL 1 was low it had a value of 19 on my Strata testing, no other mutations and negative for all the genetic testing. Do you know what that means? My MO hasn’t gone over it with me just said I really don’t qualify for any clinical trials because I just started on IBrance.
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imagine ..I would say she says what all MOS say with relation to Ibrance they want you to try that first...bc if it works well u can get years on it
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husbamd11 apparently not she not only looked at it for 2 days but had threIR have eyes on it and spoke to him personally
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Nicole,
FWIW: I would stay on Xeloda for 7 weeks and then have the immunotherapy/chemotherapy lined up next... In reviewing your results I didn't see the SUV increase to be in a "panic" mode, although concerning. It's definitely a conundrum, however I'm sure you'll make the right decision. Good luck.
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Imagine,
Is the info you posted from a Foundation One report? You can read all of the backup on the report (you yourself should have a copy, so ask your doc for it if he/she didn't give it to you). If I remember correctly, there might be some sort of a tel number on the report to ask about the report too? Or I may be hallucinating about that. I just sat with the report (especially the cover sheet) and slowly but surely went through the whole thing so that I could have a handle on it. I wouldn't say that I understood it all, but I understand enough so that I know where to go and look for more information.
This raises another thing that no one has mentioned for a while. In this age of patient portals, I don't think many of us keep our own print files of our medical records. But it's not a bad idea. Also, every time you have a scan, it's worth it to ask for a CD of the scan. If you want a second opinion from anyone, they are going to want it. It literally takes your imaging center a very few minutes to burn a scan and print out a report for you, and they will not charge you for it (at least for the first copy)
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Dear everyone... Chemotherapy kills fast dividing cells (just approximately true because there are many mechanisms), and none of the professional doctors would say anything else. Chemotherapy does what it has to do and does nod do what it does not have to do. Therefore we have chemotherapy combined with targeted therapies. First one - to lower tumor burden, second one - to work on stem cells. Then there are surgeries, local treatments, modern diagnostic tools. In that sense there's no more effective treatment known to human kind. Everything else is mostly speculations or separate cases, some random initiation of immune system that cause radical remissions. Simply to say, some people were lucky to find treatment for them but they don't know why it worked, as conventional medicine is trying to crack a very hard task: to give treatment to everyone. It is great when we can add our share and these modern treatments work in synergy with supplements, I believe one day that will play a big role too. Modern treatments do not fail, not at all. BC stage III 20 years ago was a death sentence, and now has over 50 % cure rate. Modern treatments do not fail, they just are getting ready for stage IV. It is the ultimate target for science and medicine. Some cures (let's not discuss the meaning of this word) already started to occur, although in very small numbers, but it takes time to confirm them. I am sorry that you (and I, partially) all face this dreadful disease but we can treat it, and with the help of the Almighty and luck, maybe we can also cure it. Remissions are possible. Prolonged remissions too. We are getting close. Too slow, I agree, but we are getting there...
Saulius
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Saulius...thank you for your positive input . I agree 100% with your post and I said much of the same thing (minus the statistics, in my previous post).
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