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Has anyone tied Tibetian Medicine

mehrdad357
Posts: 77
Joined: Sep 2016

I have recurrent cancer of BOT plus 3 other organs nearbase of tongue, and am currently being treated at Stanford Health care with immunotherapy for 4 sessions, and after that the MO will see if it is working or not. If it is he'll continue with it, and if not he'll switch me to chemotherapy.

I have an appointment tomorrow PM at https://www.kundewellness.org/, which is a Tibretian medicine center. Insurance does not cover. I was wondering if anyone has ever been treated or has gotten supplemental treatment from a Tibetian medicine center. If you had experience with this, I will appreciate if you share it with me.

    Thanks

 

 

phrannie51's picture
phrannie51
Posts: 4721
Joined: Mar 2012

....Tibetan medicine, but I did look the site over.  I think doing this in conjunction with treatment would be beneficial....like a person might feel better. I wouldn’t be looking to be cured, tho....

How many immunology treatments have you had?  If your cancer remains stable, where nothing grows...is that considered a win?  That they’ll keep you on it?

p

mehrdad357
Posts: 77
Joined: Sep 2016

Hi Phranie51,

Thanks for your prompt response. I have 4 "small tumors" in the area that unrerwent surgery on 9/25/18. According to my MO tumor size staying stable is not a win, and he would recommend to stop Immuno and get on pallitative Chemo. I don not have any symptoms, and feel real healthy, so I don't know why he will not be happy with "small" tumors staying the same size and continue with Immu? One scenario I was thinking if Opdivo did not shrunk the tumors after 4 sesions. do chemo for a while and get back to immuno. What do you think about my 2 plans?

For Tibetian medicine. I will ask them to change my date to 1/21 or 1/28 after I see the results of 4 Opdivo treatmeent. If news are good on that front not do Tibetian yet. What do you think about this thoght?

Meghrdad357

phrannie51's picture
phrannie51
Posts: 4721
Joined: Mar 2012

talking about?  Carboplatin and Doxil?  

If this was me talking to my Oncologist, I’d ask.....ok, maybe plead.....to stay on Opdivo until and unless there was growth. I just keep thinking that the nodules in my lungs stayed stable but the node in my neck grew the first 10 months I was on Keytruda.....so, was that a win?  Sort of....yes and no.  At 12 months on Keytruda, there were 4 new nodules on my lungs....****....that should have been a no win, except they couldn’t find anything in my neck. So I stayed the course.....at 14 months on Keytruda, all lung nodules were gone, but GriZelda had returned to my neck.  

Maybe ask the Oncologist to stay on for two more treatment.....if there still isn’t any growth, if the cancer is remaining stable....then Opdivo is doing it’s job....let’s face it.....can we ask for much more than feeling good even tho we have a stable cancer?  They keep saying that someday cancer will be managed just like diabetes or other chronic diseases.  

This is the direction my mind takes....whatever buys me time and let’s me feel good. 

p

PS....as for the Tibetan place.....they don’t do anything that is harmful, maybe check it out and see if you feel even better.....it could be like having an ace in your pocket for future reference. 

mehrdad357
Posts: 77
Joined: Sep 2016

Thanks a bunch Phrannie51 for giving me an idea that I would have never thought of. It seems I think everything my MO says is the final word, because he is REALLY good, but he is not me. As you say what is wrong with stable nodules (not shrinking or growing) and having a good time, kind of like how have been feeling for the past 2 months. and as you said feeling good with a stable  cancer is great. I may see him on Thursday for my Opdivo treatment #3, and will start steering him towards stable cancer direction.

Thanks  again

Mehrdad

 

 

phrannie51's picture
phrannie51
Posts: 4721
Joined: Mar 2012

gold....but get nervous thinking outside the box.....My MO was a researcher before he decided to practice oncology.....thinking outside the box was part of his nature. My new MO is more a “by the book” kind of guy.  He tried to talk me out of the second cyroablation, REALLY!  I’d already had one, but they are a clinical trial.....he was worried I’d lose the use of my arm or half my diaphragm.....he actually made me nervous until I realized that the surgeon at Dana Farber was very skilled....my little tumor didn’t scare him a bit. 

Your guy will listen once you tell him what you’re thinking.....if I can have stable cancer and feel good....this might be as good as it gets....and you’d like to continue this way. 

p

mehrdad357
Posts: 77
Joined: Sep 2016

Hi Phrannie51,

Yesterday I asked my MO if the nodules do not grow I would like to continue the immunotherapy, and we can manage my cancer. He said sure, but if they don't shrink he will treat me less enthusiasticly. However he will do his best.  Thanks a lot for your ideas. Since yesterday I fee I have a new life. 

 

Thanks a lot

Mehrdad

armana's picture
armana
Posts: 77
Joined: Aug 2014

Mehrdad, I know a head and neck cancer patient on a different forum in the same situation as yours for over 6 years and seems to live a good life.

He may be able share some information wit you since he has tried several alternative type treatments. Private message me if you want to me put you in touch with him.

 

 

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