chinesechick
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Thank you Darla.
Mahalo, Nancy
Darla wrote:I agree with Lainy. You did all that you could. We all did the best with the situation we were given and I’m sure most of us have questioned what we could have done different. I know it’s hard to believe right now, but with time things will get better and you will be able to take comfort in all of the good memories you have. It never really goes away, but it does got better. Grief is a very personal thing and everyone deals with it in their own way & time. I am also a believer that although our loved ones are no longer with us physically, they are always near to us. Take care Nancy.Hugs,
DarlaHi Rangani,
Sorry to hear about your mum. Yes, the only comfort right now is that my mom is at peace and no longer in pain.
Only time will heal…
Mahalo, Nancy
Rangani wrote:Dear Nancy,
I lost my mum to CC in August, just 3 months after diagnosis. I hear your pain as clearly as mine. It is so hard, the speed at which things progress and yes the questions are there, did we do the right thing, is there more we could have done? But now with a bit more clear mind, I do see and accept that we did the best we could, and can be glad that she is now at peace and not in pain.
I wish you the same strength and courage that you showed the last few months, to take you through the coming months and years.
Hugs
RanganiThank you all.
I’m so lost some days wondering all the ‘ifs’. I know I did my best but still wondering what more I could have done. Wasn’t looking for a cure..but something to keep the cancer in place so we would have had more time with mom.
Thank you Lainy, Marions, Catherine, Gavin, Darla and everyone else here on the board who answered and helped me along our battle.
Mahalo, Nancy
Thank you Gavin.
I will definitely check with my mom’s oncologist before giving her this tea.
Always appreciate your help.
Nancy
Gavin wrote:Hi Chinese Chick,Yes, the box is right! For anyone who wants to try supplements of any type like this I would strongly recommend that they consult with their docs or onc prior to starting anything at all. I am not saying that this tea is bad, wrong or harmful or anything like that at all, but just that you should take advice from medical professionals before trying it.
For questions like this I always like to go to a reputable source for info on a product as I am sure you are aware that the internet contains a billion claims about a zillion products! I guess you know what I mean though!!
Memorial Sloan Kettering Cancer Center has this on Dandelion Tea –
https://www.mskcc.org/cancer-care/integrative-medicine/herbs/dandelion
Have you tried searching on the nutrition board for more info on this one? I hope that the above link is of use to you.
My best wishes to you,
Gavin
Thank you.
I was looking to purchase Traditional Medicinals organic roasted dandelion root tea from a Down to Earth, a local natural food store here.
Thanks for the other food suggestions. Can beets and artichoke used in juicing?
Nancy
Beatriz wrote:Chinese Chick,Dandelion Root Tea is harmless but may not be tolerated well by the patient. I buy my teas at Whole Foods from the brand Traditional Medicinals. I tried one packet with my father and it gave him stomach ache so no more. The same thing happens with Ginger tea if I use more than one packet or if I use fresh ginger but boil it for more than 5 minutes.
My natural doctor have told me that eating the food will not hurt you, what hurts sometimes is the elevated concentrations of the supplements in this case if you were to give him Dandelion Root Supplement Pills.
I ignore which tea you are buying but if you buy from a reputable brand such as Traditional Medicinals and just use one packet, nothing bad happen other than allergic reaction or stomach ache. However, his stomach may react because of increased sensitivity of everything else such as chemo, pain meds, blood pressure meds, etc…
Dandelion Leaves are also sold and we put them in our stews or soups, dandelion leaves help kidneys and bladder where Dandelion Root helps the liver.
My recommendation is look for a natural doctor who can better advise you on the herbs and food use. If you call traditional doctors they have no idea and thus cannot give a recommendation.
Dandelion is only one of the many foods out there to help liver you also have beets and artichoke that are often eaten in many dishes.
Hope this helps and remember food will not hurt it is in the form of concentrated pills that supplements can hurt.
Best Wishes,
Beatriz
We are still in Taiwan and after more research, I found a doctor/researcher from another hospital that did research on Keytruda and presented his findings in a conference in Europe last year. I emailed him and he informed me Keytruda is available in Taiwan, but its out of pocket expense. Hoping to get an appointment earlier than 10/27.
I’ve read Keytruda works best with PD-L1 gene…but anyone had positive results with Keytrude without having PD-L1 gene?
I also found a clinical trial here and will be contacting the lead investigator tomorrow.
Fingers crossed!
Hi Lorna,
Thank you for sharing your dad’s story. My mom’s been battling CC since March of this year while on a trip to Taiwan. She’s been on 2 clinical trials. First one worked a little. 2nd one didn’t work at all. I’ve heard great things about Keytruda, which is not available here.
Planning on returning to the US next week and continue this battle.
Aloha, Nancy
Hi Debbie,
Dr. Javle did recommend Keytruda and said others have positive results.
I contacted the Hawaii Principal Investigator for MATCH. He was awesome. Emailed back and called me within a few minutes. Dr. Berenberg recommended an oncologist in Honolulu, who I will call in the morning.
Mahalo, Nancy
DebNorCal wrote:Nancy, I am sorry the trials didn’t have good results for your mom. If Dr. Javie thinks Keytruda may work for your mom, I hope you can find a way to get it for her.Sending positive thoughts to your mom.
Debbie
Aloha Layne,
We live in Aiea and my mom was diagnosed with intrahepatic cholangiocarcinoma in March while on a trip to Taiwan.
Before she left Hawaii, she visited Pali Momi ER 2x because of severe abdominal and back pain. They said they saw ‘something’ in the images but asked her to see PCP for further exams. My mom saw her PCP then a specialist…but while waiting for appointments for ultrasound, which was taking long to schedule, the specialist ok her for travel to Taiwan.
Long story short. She’s been in Taiwan since after being diagnosed here. Thinking of taking her back and finding a doctor at Queen’s. Can you please let me know the name of your doctor?
Mahalo, Nancy
Hi Marion,
Yes, my mom and I are currently in Taiwan. She was diagnosed with cc during her trip here back in March…been here since. We were originally from Taiwan…moved to Hawaii almost 40 years ago. Good thing we still have lots of family here
marions wrote:Nancy….is your Mom in Taiwan at this time?Hugs
MarionThanks Lainy.
Actually, we are definitely looking into going back to Hawaii. I have already contacted a family friend, who is an oncologist back home.
Also sent Dr. Javle and Dr. Chapman the CT images.
Gotta be fighting!
Lainy wrote:Dear Nancy, I am so sorry to read this about your Mom, I know you both are strong fighters and you have done everything the right way. My only thought is, would it be possible to bring Mom back here with you? I know you have been with her in Taiwan. Not sure if she is able to travel. It is not because they are not doing enough for her but all ONCs an see things differently. I am sending you my best thoughts. Hang in and hang on!My mom just had another CT scan 2 days ago. She’s been on her 2nd clinical trial (Varlitinib ASLAN001-005) since beginning of August.
After a week on this chemo, she developed high fever and chills suddenly one night and I rushed her to ER. Doctors admitted her for a week for observations. She was off the pills during this week but restarted after being discharged. Another week on the pills and then she was experiencing diarrhea, so off the pills again a week for observations.
Anyways, the scan did not show any reductions. The results were the opposite. Her tumors increased in size. We were so crushed to hear the results today.
…but about a week ago, I had a phone consult with Dr. Javle. He recommended Keytruda and also genetics analysis. I have already contacted Foundation Medicine but looks like the tissue samples completed in Taiwan is too small to be analyzed.
I asked the doctor today about Keytruda but was told its not available here.
Thought with CC rate higher in Asia, there would be more treatment options. The 2 clinical trials my mom was on are only available here. Wished they had positive results, but sadly, they didn’t.
My mom was diagnosed with CC in March of this year. She had a ruptured gallstone back in the late 70’s and hundreds of stones were removed. It was a long operation because of the locations of the stones. When she was first diagnosed with CC, I also wondered about the connection.
That’s good your dad is responding well to the treatment.
My mom was diagnosed with ICC this past March. She is currently overseas and received 10 doses of TS1 chemo. It helped but stopped working. I’ve been here for over a month to help.
I asked the doctor today about GEM/CIS. He said the results are not very effective, possibly 15% at the most…so it is great to hear its working for some.
Take care.
