Not Breast Cancer related but need help for Acute Lymphoblastic Leukemia

[Kanikasahni]

I'm a breast cancer survivor and my brother (26 years old) is a relapse case of ALL. He was undergoing treatment at AIIMS and had a chemo in September, post which his body went into Septic Shock. He sailed through it but now the doctors say there's no point of chemos and we can try alternatives. We have put him on Homeo and ayurvedic but we don't have enough time. Any suggestions from anyone here would be really appreciated. Its very urgent!!

[sumeet_shah Administrator]

I put myself in your shoes and feel what it feels. Brother sister cancer survivors. I don’t know what to say.

Go ahead and try what your heart tells you to. You are already on to Homeopathy and Ayurveda. Let’s pray that works. Also, though his appetite may have gone down a lot, please try to see if he can manage to eat fruits regularly. It’s winter and fruits are plenty around. Take him for walks. Make it a point to open up old photo albums and share good memories. I don’t want to say this but I will. What is written for the future is not in our hands. But spending good time together and developing memorable moments is definitely in our hands.

[roxboxfox RadiationOncologist]

Please seek 2nd Opinion...from various other Oncology Institutes out there in Delhi

[Kanikasahni in reply to roxboxfox]

Any recommendations..

[roxboxfox RadiationOncologist in reply to Kanikasahni]

Rajiv Gandhi Cancer Institute

Dharamshila Cancer Hosp

Apollo Hospital

[Kanikasahni in reply to roxboxfox]

Thanks. Already consulted Rajiv Gandhi, no positive reply from them. Meeting Dharamshila docs today, let's see what they say.

Anyways, thanks for your help

[roxboxfox RadiationOncologist in reply to Kanikasahni]

If all Oncologist give same opinion, perhaps in their wise opinion it may be at times wise to follow the reality and accept the truth as the further path you wish to seek may be more painful and regretful to both you and your brother.

I know this is easier said than done, but perhaps a counselor may be of some help to console and comfort you in facing the harsh reality.

May God give you the extraordinary strength to face this family crisis situation.

[Kanikasahni in reply to roxboxfox]

The oncologist at Dharamshila also do not recommend chemos at all. They have too recommended for something called carticel (which AIIMS had also suggested). And some other medicine which we can consider. Will search and proceed accordingly.

We are a strong bunch of people and we'll keep trying till we can :).

Just one more thing, would you recommend any alternate therapies? Have heard a lot where people survive on alternatives.

[MsLockYourPosts TeamBCI]

If you have access to facebook directly or through a friend, there is a very good group - ALL (Acute Lymphoblastic Leukemia) for adults - there. I got involved with it when my cousin developed an acute leukemia. It is a “closed group”. If you have any trouble joining, let me know. I will send a message to the administrator.

Alternative therapies are very unlikely to help. Do you know which chemo therapies were discussed or tried? Are stem cell transplants

(also called bone marrow transplants) an option there. The registeries for donors are international. If one is possible, doctors will first look at relatives for a match, then others of the same ethnicity, as those have the best chance of matching, but matches can come from anywhere on the world. Initial testing involves a simple swab of the inner cheek area. Many organize drives in hopes of finding a match if there isn’t one in the registers, and many have succeeded.

Those in the ALL group will know much more than I do about options. The more information you can give about your brother’s labs and other tests, and about any treatments he has had, the better chance that they may be able to help him.

If your brother’s absolute lymphocyte count (ANC) is low he should follow a neutropenia diet to help prevent infections. This includes well cooked foods, avoiding soft cheeses, no salads, and very careful food preparation to avoid cross contamination.

Fruits with heavy skins which can be well washed before peeling, and only with a clean knife, are usually OK - oranges and bananas, for example. There is a lot on google about neutropenia diets, or his doctors should be able to advise him.

Keep everything wiped down with antibacterial wipes or bleach - counters in the kitchen and bathrooms, door handles, railings, anything he would touch, and everyone around him should use wipes, hand gels, and wash hands constantly.

Make it clear to family and friends that if they are even the slightest bit sick, they MUST stay away. If you can get N95 or N99 masks, NIOSH approved only - not the cute ones or cheap ones - he should wear those if he has to go out for doctors’s appointments. Other than absolutely necessary exposure to others, he should stay away from crowded places or anywhere where others might have left germs behind.

Both Dr. Shah and Robofox have been very honest about the reality of your brother’s situation, but, at the same time, miracles happen. Treasure every minute you have with your brother! I hope that he is one of the miracles! How old is your brother?