Relapse of SS and require assistance


Hi all,

I was diagnosed with SS in 2012 in my right maxilla area - underwent a successful surgery, chemo, and radiation, and was cnacer free by the end of the year. Had a great 3 odd years in the interim.

However, I suffered a relapse of the disease in April 2015. The SS is more or less around the same area this time, but it is also additionally around my ICA (Internal carotid artery - which supplies blod from the heart to the brain) and on the base of the bone where my brain rests. Unfortunately because of the locations of the tumour, it was pre determined at an early stage that surgery with a 100 % excision of the disease was definitely not possible.

I underwent 6 cycles of chemotherapy from May - August 2015. This was targeted chemo based on gene mutation tests conducted on my biopsy tumour sample. Unfortunately, the tumour started growing externally inside my mouth and right maxilla cavity around the same time; and considering that this is SS, yhe growth of the disease is very aggressive with changes in size being noticed more on a daily basis.

So in September 2015, we decided to undergo a surgical procedure of debulking the visible part of the tumour as it had grown so big that it was difficult for me to even take liquids, forget solid food. The surgery went of fine, and in 3 weeks we started with the chemo again, this time oral medication. Unfortunately, within the 2nd week of the chemo, th tumour again started growing aggressively.

This led to another debulking surgery towards the end of November 2015. Within 2-2.5 weeks of the surgery the tumour started growing again. The doctor this time suggested radiation, but within 8 sittings we had to discontinue as the tumour continued to grow and made it difficult for me to sleep on the radiation table. In fact, it is oushing against my eye now, and I am not able to see properly - double vision.

This is the stage where I am currently. It appears that another surgical debulking might need to be done, but the obvious conclusion here is that at an allopathic medical level, I have run out of options. Chemotherapy and radiation obviously dont have any effect on the tumour at all.

Since I am based out of Mumbai, India; I have just started trying out the Ayurvedic route, but its too early to comment on anything, and to expect results overnight would be foolish.

Additionally, I have just come across a new immunotherapy known as 'dendritic cell therapy' where they try to boost the immune system to fight the cancer. Some new kind of non invasive laser procedure where the tumour is dried up die to excessive heat is also being explored. Bt other than this, I am running out of options.

I was 32 when first diagnosed in 2012, and am 37 now. Its way too early for me to die, and there is so much that I want to do in life. I am generally a fun loving smiling personality, but I can see that, in spite of my best heroic efforts, I have become a darker human being over the last 5-6 months. Guess this disease really pulls you down.

I try to be as positive, optimistic and hopeful of living a long happy life, but this increasingly is beginning to appear bleak.

I would appreciate any kind of help / assintance of any kind on this.


What was the targeted chemo you tried? Was the oral chemo votrient? Is the dendritic cell therapy in India?

This is a horrible situation :-( I am not sure what I would do if I was you...


The dendritic cell therapy is in India

The oral chemo votrient was Everolimus

I hope you can pray


I will definitely pray for you Aashish...

Have you ever had high dose ifosfamide?

Do you know the name of that specific dendritic cell therapy?


Hi Aashish,

Did you try any specific diets to boost your immune system? Also my doctor told me an information about a direct relation between SS and physical activity.
Sorry because I have nothing to help you with but I will pray for you.



Anything specific you can recommend Muna?

Muna said:

Hi Aashish,

Did you try any specific diets to boost your immune system? Also my doctor told me an information about a direct relation between SS and physical activity.
Sorry because I have nothing to help you with but I will pray for you.



Well I was taking wheat grass powder. You can read about it. I don’t know if it worked but I never had infections during my chemotherapy and all my blood tests were good.Also I was taking turmeric,green tea, dark chocolate and olive oil and I was trying to take as much fibers as possible in my food.But the most important thing is to keep yourself away from stress and pray for God as much as you can. I find praying as a source of strength and peace in my life.

I wish you a long healthy life. Keep fighting as we all do.
I will have a surgery to remove my tumor after 2 days from now.


All the best for your surgery Muna. Yes, I have been taking wheat grass, turmeric (which is a regular part of our diet here :)),neem leaves juice, green tea, etc. However, my challenge is the chemo and radiation aint working.

Anyway, fingers crossed and hoping for the best. Irrespective, live life with a smile :)


Hi Aashish,

I am in India and I am also taking an ayurvedic medicine for my SS in lungs. It seems to be keeping the SS stable for now.

I am not sure if this is the one you are trying but here is the info.. One of the members on this forum recommended it to me


Athulya Ayurvedic

Call the doctor and see what he says.

Wishing you well and will be praying for you.