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Mon, Jun 8 9:48am · So sad: Husband has glioma and I feel he is fading away in Brain Tumor

Oh @rosez, don't be so severe with yourself. What you are going through is difficult and no one is perfect, besides, there is no right way to get through. Be good to yourself, you need it to last. We all know here how difficult it is to accompany a seriously ill person. I send you a big warm hug because what you support is really hard: courage, one day, this difficult moment will be behind you. XX

Sun, May 24 7:42am · So sad: Husband has glioma and I feel he is fading away in Brain Tumor

Hello Rosez @rosez, I'm sorry to hear about your husband's condition (I just read your first post). I don't know how changed your husband's attitude, but I thought that my personal experience could perhaps help you.
I myself have a WHO4 glioblastoma located in the 3rd ventricle (limbic system). When my tumor is bleeding, it presses on the thalamus and hypothalamus, which changes my character. I no longer feel emotions, I become more passive, I speak less, I lose the desire to do things. It does not make me sad but it is difficult for those around me to see me like this. I thought to myself that perhaps your husband does not live his situation as you perceive it. It is very mysterious how the brain reacts. It depends on the location of the tumor. For my part, since the hemorrhage has subsided and I have become myself again, I no longer see this behavior (that some older people, looking into the void …) in the same way. I remember that I was not unhappy contrary to appearances. I was living in the moment and I felt pretty good (because I no longer felt stress). I remember I felt that I was not alone, that my husband was there for me and that I could trust him. Also, during chemotherapy, I put myself in "conservation" mode, in a small ball to preserve what I had left of energy. What worries me today is the distress of those I love. I now try to communicate my impressions to my family so that they know that, for my part, I was not unhappy and they did well.
Courage. There is always hope and the most comforting in illness is the love and tenderness received from those we love.

Sat, May 9 10:10am · Watching a Meningioma Brain Tumor in Brain Tumor

Hello @dusktodawnisparkle, I'm sorry to hear about your diagnosis. A brain tumor is never good news. I myself have a Glioblastoma diagnosed in the fall of 2018 located behind the optic chiasm. It is an aggressive tumor with a diagnosis of impending death. I tell you this because, despite what the doctors say, I am still alive (very much alive) and to this day, I have not lost any cognitive function or vision problem. (After my chemotherapy treatments, I happened to have a few short episodes of visual epilepsy. It lasted a few minutes (10 minutes). It doesn't hurt. It's just strange because part of the vision changes during the seizure but then returns to normal.
I like to think positively, (it helps me get through the disease) so, with each visual epileptic attack, I told myself that it was a sign, a good sign that my chemotherapy was working. I have learned in recent months that current medicine does not know much about brain tumors, so be skeptical, especially about the bad news. Your body is resourceful and it wants to heal. I don't know much about meningiomas, but I do the ketogenic diet, and I take certain dietary supplements (ask a certified naturopath) that control tumor growth. I now live with this tumor as if it was of a chronic disease and I try to do everything not to feed it (a bit like a plant that we do not water so that it does not grow). It seems to work pretty well. For the moment, my tumor remains quiet and does not grow.
Hope this can help you, good luck and most of all, keep your spirits up because it helps you and your brain fight this meningioma.

Tue, Apr 21 6:28am · Glioblastoma Grade 4 in Brain Tumor

Hi @nelliegraywar, for my part, I was diagnosed with Glioblastoma multiform 4 (GBM) in the fall of 2018 and have been on Intra-Arterial chemotherapy (a special treatment directed directly into the brain by the carotid artery) from December 2018 to February 2020. We have just stopped chemotherapy because results are mixed. It does not seem to shrink the tumor. But it didn't put on weight either, which is extraordinary when you consider that my prognosis was, according to my doctor, less than a year.

The tumor is deep, in the center of the brain, in a sensitive area (above the hippocampus). It is not operable and cannot be irradiated by radiotherapy.

I first had chemo at Carboplatin which I endured best. I managed to live fairly normally. Last summer we then changed the poison to Melphalan and then Methotrexate which was very difficult. My tumor is typical. We advance in small steps, we observe the MRI and we adjust. Since I had been in chemo for more than a year, the results were average and my general health was deteriorating, we decided to stop the treatments and see how the tumor would react. Once again, we are advancing slowly and adjusting.

You know that the "chemo-drug" (which I call the poison!) Is used to kill the tumor but, as it travels in the blood, it also destroys the cells of other organs, particularly the rapidly reproducing cells (blood cells, intestine cells …). We must therefore assess the benefit / cost ratio in our choices. For my part, the chemo started to damage me more and more for very little result.

Now let's see how the rest of my tumor reacts without treatment. I hope that it will not move. I try to convince myself that it will be fine, that if I leave it alone, it will leave me alone in return. After all, it is an atypical tumor. I imagine that it will give me several years to enjoy my life and spend time with my family, why not?

Wed, Apr 1 7:53am · New device: A neuroinfusion drug delivery system for brain tumor chemo in Brain Tumor

You're right Becky@becsbuddy, the advantage of Ommaya's reservoir is that it sends the drug directly to the tumor. There are therefore fewer negative side effects of chemotherapy on the patient.
I discussed this with my neurosurgeon who has already installed some of his patients. He explained to me that this technology is effective depending on the location of the tumor. In my case, because the tumor is located near the 3rd ventricle, this is not an option but it would seem that it is a proven biotechnology for GBM.

Tue, Mar 31 7:20am · Glioblastoma (GBM) trials and therapeutic devices (Optune) in Brain Tumor

Lisa Lucier@lisalucier, no, I don't have the opportunity to try physical devices (like Nativis) against GBM. I have had 14 intra-arterial chemotherapy treatments and I am currently under observation. I have been on the ketogenic diet since the start (fall 2018) and I take a lot of supplements (advised by my naturopath, Ben Williams and Jane Mc Lelland). I'm pretty good. The Radical Remission book also helped me see my GBM differently. I am hopeful of being able to heal! (To say that a year ago, I was convinced that I would not go through the year – I have come a long way since).
Good luck to all. Remember, it's not over until it's over (as long as there is life, there is hope).

Fri, Mar 6 5:14am · New device: A neuroinfusion drug delivery system for brain tumor chemo in Brain Tumor

Hello @lisalucier, I discussed this device with my neurosurgeon, a researcher-expert in the field of GBM. He told me that this device does not meet the needs precisely because it pours the poison-chemo locally while brain tumors are known to be infiltrative (arborescent). He therefore prefers intra-arterial chemotherapy, which is scattered in all blood vessels.
I was a little disappointed because the chemo poisons my whole body (and not just my tumor). This is also the reason why, after 14 treatments over 15 months, we have just stopped this medicine. In the coming months, we will see if my tumor, which is atypical, does not remain stable by itself.
So, according to my doctor, this technique would not be suitable for GBM multiform. But perhaps other neurologists would see an interest in it?

Wed, Jan 29 11:13am · High grade Glioma - What questions should I ask? in Brain Tumor

Hello Becky, Volunteer Mentor @becsbuddy,
yes I informed my team (nurse and doctor). The nausea would be normal and I have a few medications that help a little. For the itching, they seemed surprised. Maybe I was the first patient to mention it. For hair loss I was advised of brewer's yeast and the biotin supplement.
I was wondering if other members had more information on methotrexate and its side effects.