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k8e View Drop Down
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    Posted: Nov 27 2019 at 5:23pm
Hmmm...its not illegal; its not an approved treatment but its legal.
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dono7392 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dono7392 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 27 2019 at 9:41am
Apparently the type of mistletoe that is used in Europe is illegal here.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote k8e Quote  Post ReplyReply Direct Link To This Post Posted: Nov 26 2019 at 11:59am
dono7392: Thats disappointing.
Integrating other therapies was very important to me so I made sure that my oncologist was willing to work with my naturopath and integrative doctor.

Re: mistletoe specifically, she was fine with it. The only caution was that if my liver levels started to dive, she would want me to pull back on the mistletoe. However, so far, things are a-okay.

Not sure how important other therapies are to you but if they are important, you might want to find another oncologist.


Edited by k8e - Nov 26 2019 at 12:00pm
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Post Options Post Options   Thanks (0) Thanks(0)   Quote k8e Quote  Post ReplyReply Direct Link To This Post Posted: Nov 26 2019 at 11:56am
Will post here today (also responded via messenger)

Hi,

Yes, I started the Xeloda and mistletoe injections together. I started round 3 of Xeloda today.

The first round of Xeloda was unremarkable. Half way through the second round, I got very nauseous and vomited. I called triage and they suggested I start to take Zofran to control the vomiting and nausea. While the vomiting stopped, the nausea continued. My appetite decreased tremendously and I had occasional cramping in my stomach. I lost 3 lbs during the "bad" week of Xeloda. Once I stopped the Xeloda, things improved.

I had labs and follow up with my oncologist yesterday. She is not convinced that my nausea and vomiting was from the Xeloda since I did well the first round. My labs came back good - both red blood cells and white blood cells are coming back strong (I did infusion chemo first, then surgery, now Xeloda). Takes a while for those counts to come back from the infusion chemo.

I discussed the nausea and vomiting with my naturopath and she suggested a ton of remedies and supplements to help, so I am prepared if the nausea and vomiting comes back.

So far, no signs of hand / foot syndrome or diarrhea with Xeloda (which from what I understand are the most common side effects).

Re: mistletoe, I am doing well. I was nervous about injecting myself but its pretty easy once you get the hang of it. Typically, it takes a while to find the right dose / level of reaction, however, I got an amazing reaction at 1 mg (which is the lowest ampoule from the pharmacy I buy from). So much so that my naturopath advised me to try .5 mg (1/2 ampoule) and I am still getting a good reaction there. I believe the mistletoe is recommend for years, so good to get comfortable with it.
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sophie View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sophie Quote  Post ReplyReply Direct Link To This Post Posted: Nov 26 2019 at 11:40am
why your oncology says no?
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dono7392 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dono7392 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 26 2019 at 11:38am
Will your oncologist allow mistletoe? I have a holistic doctor who will give it to me but the oncologist says "no."
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sophie Quote  Post ReplyReply Direct Link To This Post Posted: Nov 25 2019 at 6:44pm
Hi, how is your xeloda and misotle treatment? I am thinking of you wondering if you have any updates? I am about to start and get a bit nervous ... any side effects from both drugs and did you start both together ?

Thanks 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sophie Quote  Post ReplyReply Direct Link To This Post Posted: Oct 20 2019 at 6:03pm
is there a time frame when should we start xeloda after sugery or chemo is over? My doctor still asking me to wait after 1 month of finishing my treatment ... how long did you wait to have you taking xeloda?
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Post Options Post Options   Thanks (0) Thanks(0)   Quote k8e Quote  Post ReplyReply Direct Link To This Post Posted: Oct 20 2019 at 10:08am
I did. So far so good.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sophie Quote  Post ReplyReply Direct Link To This Post Posted: Oct 17 2019 at 10:37pm
I am thinking of taking immunotherapy as prevention ... did you start xeloda yet?
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Post Options Post Options   Thanks (0) Thanks(0)   Quote k8e Quote  Post ReplyReply Direct Link To This Post Posted: Oct 15 2019 at 3:35pm
Oh, also re: side effects. I did check and immunotherapy does have side effects. The one I looked at is similar to most chemo used for BC.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote k8e Quote  Post ReplyReply Direct Link To This Post Posted: Oct 15 2019 at 3:34pm
My doctor was very clear that the idea behind the Oxel trial is that there is data showing improvement with immunotherapy and chemo for metastatic patients. Idea is that if helps metastatic, what about early stage? They don't know if it will help at this time. If you land in the non-Xeloda arm, you can do Xeloda after the trial. I think I am sticking with Xeloda; not sure I want to risk delay (trial could mean 6 months of trial and an additional 6 months of Xeloda).
Re: Keynote 522, read briefly and past that point in treatment, I assume its not an option.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sophie Quote  Post ReplyReply Direct Link To This Post Posted: Oct 15 2019 at 3:21pm
Merck has the program to get the drug... I am just not sure about side effects ... what did your doctor say about the side effects on the immune therapy?
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Post Options Post Options   Thanks (0) Thanks(0)   Quote k8e Quote  Post ReplyReply Direct Link To This Post Posted: Oct 15 2019 at 11:16am
I am getting mistletoe through my integrative doctor / naturopath.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote k8e Quote  Post ReplyReply Direct Link To This Post Posted: Oct 15 2019 at 11:15am
I donít think immunotherapy is approved for early stage unless through a trial. Were you able to get outside of a trial?

Edited by k8e - Oct 15 2019 at 11:15am
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sophie Quote  Post ReplyReply Direct Link To This Post Posted: Oct 14 2019 at 11:24pm
I wanted to try Keytruda 522 immu therapy
, xeloda , and later on do copper deletion ... where do you go to get injection of mistletoe? 

You are Not trying immunization therapy ? You can get both...
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Post Options Post Options   Thanks (0) Thanks(0)   Quote k8e Quote  Post ReplyReply Direct Link To This Post Posted: Oct 14 2019 at 10:53pm
Going with Xeloda and mistletoe. What about you?
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sophie Quote  Post ReplyReply Direct Link To This Post Posted: Oct 14 2019 at 10:48pm
what is your plan then?
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k8e View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote k8e Quote  Post ReplyReply Direct Link To This Post Posted: Oct 14 2019 at 10:45pm
Not sure about PDL1.
Mistletoe is pretty standard care in parts of Europe. It boosts your immune system and can make chemo work better / minimize side effects. Hopkins is doing a trial now.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sophie Quote  Post ReplyReply Direct Link To This Post Posted: Oct 05 2019 at 8:21pm
Do you have PDL1 expression as which is benefit in immunization therapy... also, why you are taking mistletoe ?
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