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k8e
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Topic: Hi! Posted: Nov 27 2019 at 5:23pm |
Hmmm...its not illegal; its not an approved treatment but its legal.
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dono7392
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Posted: Nov 27 2019 at 9:41am |
Apparently the type of mistletoe that is used in Europe is illegal here.
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k8e
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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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k8e
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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
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Posted: Nov 26 2019 at 11:40am |
why your oncology says no?
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dono7392
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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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sophie
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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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sophie
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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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k8e
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Posted: Oct 20 2019 at 10:08am |
I did. So far so good.
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sophie
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Posted: Oct 17 2019 at 10:37pm |
I am thinking of taking immunotherapy as prevention ... did you start xeloda yet?
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k8e
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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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k8e
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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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sophie
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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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k8e
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Posted: Oct 15 2019 at 11:16am |
I am getting mistletoe through my integrative doctor / naturopath.
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k8e
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Posted: Oct 15 2019 at 11:15am |
I don’t 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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sophie
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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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k8e
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Posted: Oct 14 2019 at 10:53pm |
Going with Xeloda and mistletoe. What about you?
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sophie
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Posted: Oct 14 2019 at 10:48pm |
what is your plan then?
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k8e
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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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sophie
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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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