Glioblastoma brain tumor

[ChazII]

My son was diagnosed March 2019. We are coming up on the one year anniversary which means in his case only 3 to 4 months left. He is taking Avastin to help shrink the tumors but that just started on 2/3/2020 and his second infusion will be on 2/17/2020. He also started oral chemo 1 week ago and that med is Mekinist. Is there anyone else here at DU who has had a loved one with this type of brain tumor? It is located in his thalamus. It is also the type of tumor that took the life of senators Kennedy and McCain.

[wendyb-NC]

1. My prayers are with you and your son.

My heart goes out to you,it has to be fearsome time for you both. I hope for a some of the chemo potion he is being given, works some amazing magic, to shrink, arrest, nullify his tumors, and he over comes this.

[blm]

2. ((Chaz))

[MelissaB]

3. (((Hugs)))

My mom had a glio about 20 years ago. She only lived 6 months. It was fast and brutal.

I'm so sorry.

[lark]

4. Hugs and prayers!

My best friends' mom had this 40 years ago, so I don't remember any details except her extreme pain. I'm sure that will have greatly improved in the years since then, but may be something to watch out for.

[murielm99]

5. I am so sorry.

[ChazII]

6. He has no pain

and for that we are thankful. Because it is in his thalamus he is losing life skills like swallowing and control of his left side. The tumor is on the right side of the thalamus. He did wonderful for the first 3 months but then he got hydrocephalus and that took everything.

[wackadoo wabbit]

7. I'm so, so sorry!

You have both my sympathy and my empathy. My husband had cancer, so I know how hard this can be.

I don't want to be presumptuous, but have you looked into your son going on a ketogenic diet? When my husband was sick, we learned that many cancers can be controlled, if not actually cured, by staying in ketosis. There was one study of a person who had controlled their brain cancer (I don't now remember the type) for a full decade by stringently following a ketogenic diet. Their cancer didn't really shrink much, as I recall, but it no longer grew.

A ketogenic diet can also work well as an adjunct therapy to chemo and/or radiation.

There are a couple of clinical trials looking into glioblastomas and ketogenic diet that are currently recruiting. But you could probably, perhaps with the aid of a dietician, do this yourself.

If you're interested, I'd be happy to send you some pubmed links. And to answer any questions to the best of my ability, of course.

I wish you and your son all the best.

[ChazII]

8. We did try keto

but when he continue to lose weight I took him off at his request. I went from 170 pounds to today's weight which is around 125. I can see his shoulder blades, hip bones and rib cage. It does break my heart. He is being treated at Barrow Neurological in Phoenix, Arizona. The Institute is very pro Keto. For brain tumors they are also very pro Optune.

[wackadoo wabbit]

9. Yes, keto can be *very* hard to tolerate

My husband tried it, but he just couldn't keep doing it.

Barrow is a very good institution for brain issues. (I have a friend who goes there.) If Barrow is into keto and Optune (I just had to google that; I'd never even heard of it before), it sounds as if your son is getting the latest treatments, which is definitely good.

I'm so very sorry for what you both are going through. I wish there were something I could do to help. I truly wish the best for the both of you.

[ChazII]

10. Barrow is a wonderful place

and my son started two new medications this month. He began Mekinist which is to shrink tumor and as had great success in people who have neurofibromatosis type 1 or NF1. My son and I both have NF1. He also has a plexiform tumor on his left cheek. My son looks like the Disney version of Quasimodo and possesses the same lovable personality. No bitterness on what cards life has dealt him.

Knowing that the folks like you here at DU are sending us prayers, white light, healing, hugs all of those help us get through each day.

[ChazII]

11. Tumor has shrunk!

We were in the emergency department and a CT scan as well as an MRI were ordered. The MRI showed the tumor has shrunk! I am looking forward to seeing the scans on Monday when he goes informed his Avastin infusion.