Quantcast

Son just diagnosed with stage 4 met lungs - Looking for help/information/support


#1

The following was posted by Eagle in the blog section:

"Hi, Not sure where to turn to and what to think .... so crushed and totally in shock. Our whole family is... Our son is 31, father of 3, diagnosed with synovial sarcoma last year (June 2014) which ended with the amputation of his foot. Was told that no further treatment was needed as all the cancer was removed.

Xrays and follow ups every 3 months were all good until the one the October where it showed spots on the xrays. A ct scan confirmed that the cancer has returned, metastasized senovial sarcoma, multiple nodules throughout both lungs, stage 4.

Dr says not operable , too many and too deep, offers that the only option is doing Doxorubicin chemo to hopefully shrink tumors/stop rapid growth and give him maybe up to a year of life............ They want to start chemo immediately.

He lives in Alberta, only one Dr is available and somewhat knowledgeable in sarcoma cancer and we feel that there is no where else to go for a second opinion or even to know if there is other options? Canada is not very advanced in this area obviously....

This is devastating news and we want to believe that there has to be more hope for him to fight this ugly disease! If anyone has any information for us or anywhere we can call please let me know and I will be forever grateful. If what they are saying if the reality of this cancer then please be honest as I need to know the facts to be able to deal with what is ahead of us. My son is a fighter and has always had a positive outlook in life. He wants to fight this and beat it and I want him to have the best care he can have. I want to educate my self as much as I can so we can fight this together!

Thank you, much appreciated

A mother fighting with and for her son...."


#2

My heart goes out to you.
Please get your son on Keytruda. It is a PD-1 inhibitor. His tumor has to be tested. I’m in a clinical trial for it at UC San Francisco. It’s working! But it only works on tumors that are PD-1 positive. There are 6500 people in clinical trials for Keytruda (pembrolizumab)all over the United States. By the way, the drug starts working in six weeks.

My plan B is Northwest Biotherapeutics. They are a biotech company in Maryland, but their clinical trials are at MD Anderson. They presented at the ASCO Conference and demonstrated success with your son’s cancer. They make a vaccine called DC Vax. They have a video on their website that will explain their product.
The website to find clinical trials is called “clinical connections.” If your son cannot afford to fly to the United States, there is a website called “Angel’s Flight.” Pilots will fly cancer victims free.
Good luck, Cheryl


#3

Your son should have done radiotherapy and chemotherapy just after the operation. Now he has to do chemotherapy both doxrubicion and another chemo not sure of the name now but they are known for synovial sarcoma he had to do 6 cycles of each medicine. He had to change his life style eat healthy live healthy be happy eat very very less sugaYour son should have done radiotherapy and chemotherapy just after the operation. Now he has to do chemotherapy both doxrubicion and another chemo not sure of the name now but they are known for synovial sarcoma he had to do 6 cycles of each medicine. He had to change his life style eat healthy live healthy be happy eat very very less sugar and if no sugar at all it will be better

In Canada there is a center that provide Maurijuana for patients with cancer call them and see how this can help your son Google them.

Don’t give up and hopefully he will get better.r and if no sugar at all it will be better

In Canada there is a center that provide Maurijuana for patients with cancer call them and see how this can help your son Google them.

Don’t give up and hopefully he will get better.


#4

Our hearts go out to you too… There are many places in Canada that have expertise in Sarcoma. In my jurisdiction there is Juravinski (Hamilton) and Princess Margaret (Toronto) in Ontario. Unfortunately each Province is separate. There are some very excellent places in BC. One for healthy eating and living (Inspire Health) and BC health appear to be leaders in Canada in Proton Radiation Therapy, which I feel is very promising. Put your son on list for Clinical trials on the Canada Cancer site and make inquiries on same to friends and other medical… Very important to get second and third opinions… This site has been very useful for myself so please keep coming back as they are always trying to give you more info on everything including clinical trials… if there is anything just post to this thread …


#5

Thank you for all your feedback.... very much appreciate! <3

My son starts his first of 6 treatments of doxorubicin today. They will check his heart after second treatment again and do a scan after the third treatment to see if it's working.

He was told there is no time to waste as the tumors are fast growing and the longer he waits the worse the outcome. This was offered only to slow down the rate of growth and to give him more time with his family... he is believing that he will get better and fight this! I am so devastated and cry every night. I am at a lost of what to believe and want to hope that we can find an answer for a better treatment that will give him more time then what this doctor is saying.... I have spent hours doing research and reading on this horrible disease these last couple days and feel like there has to be some answers somewhere.

His Dr talked about a clinical trial starting in the new year, but said it would be too late for my son by then....

Has anyone done cannabis oil while doing chemotherapy? We were told that it lowers the platelet levels even more and would make him even more at risk of bleeding out. Anyone with experience with this?

He has changed his diet already, cut out carbs and sugars and takes vitamins and supplements which the doctor knows about. He will be juicing and looking into holistic approaches too. He is open to anything that will help him.

Time is of the essence and I need to keep searching and my next plan is to get a copy of his medical records and make some phone calls to clinics in the states maybe....

Any advice where I can start?


#6

Call dr. Gerald Rosen. He is an expert in this type of cancer. Inquire about his hi dose ifosfomide regimen. Also look into immunotherapy trials. I hear they are a game changer in the world of cancer. Take a deep breathe and remember miracles happen everyday. Check out chrisbeatcancer.com, very inspiring. Also Kris’s carr(crazy sexy cancer)- she too has stage 4 cancer for over 10 years now. I am sending love and strength your way.


#7

Thank you Sage, appreciate the information and love. We will be making phone call as soon as we can next week.

I am grateful for all of you, it is helpful and comforting not to feel so alone in this journey! Love, Light & Strength for you all. You are in my prayer.

More Questions......

Trying to figure out if Cannabis oil is safe to take while on chemotherapy? specifically doxorubicin therapy

We are getting conflicting information regarding taking cannabis oil during chemo treatments, doxorubicin, and would like to know if anyone has more knowledge?

Does it affect you negatively or not? Some say it does increase the toxic effects of the doxo and shouldn't be used while doing treatments and some say it actually helps prevent some of the negative effects on the heart.... really don't know what to believe any more?

Also has anyone ever heard of MMS ? It was first developed to address Malaria in Africa, but has now been shown to address many toxicity conditions, including some cancers.


#8

There hasn't been any clinical trial studying whether cannabis oil is safe to take with doxorubicin. It doesn't surprise me that you found people having very diverse experiences with it. This is what typically happens with any drug simply because we all carry different genes... There is no way to predict who will get the toxic effects, the positive effects or the neutral ones.

That being said, you can find a lot of discussions about cannabis on this website by using the search button at the top. Here is one that is relevant to your question:

http://www.synovialsarcomasurvivors.org/forum/topics/cannabis-oil-1

I have not heard about MMS but it looks like a pretty nasty thing:

https://en.wikipedia.org/wiki/Miracle_Mineral_Supplement


#9

I had lung metastasis and they all dissappeared with chemotherapy. No one can tell you what will happen.
I wish you all the best.