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Synovial Sarcoma - Online Support Group

Do alternative therapies work?


#1

Hello all. So our first appt at MD Anderson in Houston is next week (Happy Thanksgiving!) I’ve been trying to read up on alternatives to the usual radiation and chemo treatments. Has anyone had good turnouts with alkaline diets or other natural remedies? There is so much much out there on the web both pro and con that I don’t know what’s what. I would love to know there is something safer for my son.


#2

All the long term survivors I know have followed conventional treatments...


#3

I have to agree with Elodie. I just read last week about a gentleman in Denver who took the all natural, homeopathic approach for several months only to resort to conventional treatments. By the time he finally went in, his tumor was inoperable. I don't say this to scare you, but more so that you can make a decision that's right for you, fully knowing what some of the consequences may be.

I fully believe in the power of nutrition, but don't personally go over board. I want to give my body what it needs to protect itself, fix itself, and be healthy but I also need something that's going to kick this tumor's butt, and I most definitely need somebody to cut this bad boy (or plural in my case, bad boys) out!! I figure by doing both, I'm winning or at least giving it my best shot!

Ultimately, if you do your research with both treatments and finding the best doctors, you can decide what's right for you and have no regrets. MD Anderson is one of the best, if not the best, in the nation so at least you know you're starting in the right place! ;)


#4

School of thought with the natural approach is that chemo & radiation (if not successful) strengthen the tumors. My son, my wife and myself all wish we would have done surgery and then natural, rather than surgery, radiation, chemo, then natural. The years he had during the natural treatments were great years, years in which he fully enjoyed life and was able to live it to the fullest.

He started with stage four and it immediately metastisized to the lungs DURING chemo. The ONLY plus I can see with traditional is that insurance covers it.

We did just lose our son on October 11th, six years post first sign of tumor, so I can't tell you the natural approach was "successful" long term, but question: Just what is "long term"?


#5

Thanks Sonnut. That’s where we are at as well. I’m hoping that since the initial tumor is out and there seems to be no more that we could investigate natural methods also. The internet is just so full information that there’s no definitive answers about all this. It’s full of opinions(and we all know the story about those. Haha) I am ready for out appointment to find out information, but then again I’m not. If you know what I mean. I just feel like this is all a bad dream.


#6

AGD, I am so sorry about your son. It sounds like he had wonderful parents that wanted to do their very best for him though. Thank you for sharing his (and your) story through your grief. What natural treatments did you use? We haven’t had any radiation or chemo yet. I had a friend who had pancreatic cancer who did the natural route and he is doing great several years later. But of course with this being a different type of monster, I just didn’t know. You and your wife are in my prayers.


#7

Thank you,

He saw Dr. Colleen Huber's team in Tempe Az. and rec'd high doses of vit. C with DMSO and several other ingrediants in smaller doses. I believe there is a Dr. in Tulsa, offering similar treatments. We also eliminated sugars from his diet and greatly reduced carg intake. The diet is a big deal and difficult - quite the learning curve to create a diet that greatly reduces sugar spikes.

More effective than anything (even if the outcome is not what we hope) is prayers..... maybe especially if the outcome is not what we hope. Thank you so much for yours and please know everyone here is in mine.


#8

I do question chemo after surgery, as SS is a "cut it out" cancer and chemo isn't the cure. In my case, I have to have chemo to shrink the tumor so that we have clear margins during surgery, and being a "cut it out" cancer, clear margins are essential. I WISH my cancer was in a place that it could be cut out and I didn't have to do chemo.

HopeAndFaith, if the cancer is already all cut out, I would most definitely pursue natural options to keep the SS away and under control. I'm so happy for you that it's out, that's great news!


#9

In a way, it's easier to follow doctor's recommendations than not. If there is a relapse, it will be easy to blame it on the doctor who is supposed to know best. Otherwise you run the risk to feel guilty for the rest of your life. It's much easier to make decisions when your own life is at risk than when your child's life is at risk :-(


#10

I'm a 22 yr old female and I've refused any conventional treatment. Currently vegan, loving jesus, supplementing vitamins, using cannabis oil, enjoying life, and staying healthy. I literally have never felt more alive in my short life- people who don't have cancer should really do all the "natural treatments" just to live a better life.

My tumor was less than a 1cm in my leg and successfully removed with no further surgery but because I chose not to do radiation they're telling me i have a 48% of local recurrence and I am hoping to prove "them" wrong. After my next scan I will be posting results and more details on what I have done. Every thing I chose was based on personal intuition & personal decision. I just lost my brother in law to lymphoma less than a year ago at the very same (world-renowned) hospital I'm being seen at. I saw them pump him with chemo until his organs failed. We prayed in his room till his last breath waiting for a miracle and all I could think about was how I would make it my mission to not end that way.

I know my experience steered me away from conventional treatment but if my countless hours of research (of actual doctors) has shown me anything, its that conventional treatment is not the way for me and is not how I wish to spend whatever life I have left on this earth.

If you are curious to learn more of what I have looked into, look up Dr. Robert Morse on Youtube. His videos resonated with me especially since we share the same Christian faith.

*please note that every single person's SS is so different and I don't expect anything (conventional or natural) to work. My decision was based of off how I want my quality of life to continue from here on out.

Good luck to your son, prayers sent your way for peace and healing!


#11

Wow. Michelle, thank you for your insight. That’s exactly how my husband and I felt. I have watched so many people I care about wither away on conventional treatments and eventually die anyway. They had no quality of life at all. We didn’t want that for our son. We had a natural doctor we were going to see after his surgery if they recommended to us chemo or radiation. This doctor treated a close friend who was diagnosed with pancreatic cancer. After a couple of years of natural treatment(basically supplements and diet), The cancer is gone. He been free for almost -0 years. We knew this could be a first option for our son because of several factors. He was young, healthy, the cancer was small (2cm), it was slow growing, AND he got clean margins with his surgery. Plus when we discussed options with him he was definitely on board to try the natural pathway first. We are Christ followers and did a lot of praying before our decision. As of right now, he just had his 9 month check up and still has clean scans!! Woohoo!! I will definitely check out the YouTube video you mentioned. Thank you for that. I will be praying for you as well for certain. Thanks for the feedback.


#12

Hope and Faith - your name says everything! My original terrorist was removed last October. Exactly one year later it has moved from the abdominal wall on the left side to the liver with 2, 2.5 cm spots - one in front and one in back. Ill be meeting with the oncologist and the surgeon within the next 10 days. However, I have started researching alternative methods. I've just started on turkeytail capsules and green tea with additional extract added to it. My thought is to build the immune system to fight the cancer cells. I'm also investigating juicing. I have come across herbs that specifically say they fight scarcomas, but need to research it further.

M D Anderson is a great place. With my first occurrence (stage 3) I chose not to follow their advice of two rounds of chemo followed by radiation and then surgery. I had the surgery in my home town and had beautiful clear margins afterwards. But, scarcoma has a nasty way of sneaking around. I may end up at M D Anderson in the future.

Whatever you decide, stay strong. You can win this battle.


#13

hi Michelle; trying to message you to see if you have any advise for my brother who has a similar prognosis. Any luck with the natural remedies