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statistics of a glioma blastima multiforma

panormitis
Posts: 16
Joined: May 2011

Statistics

What can I say??? Statistically my husband was given just a couple more weeks of life. This was at the end of April 2010.

Statistically, the side effects of chemo brain surgery/radiation/chemo are many.

Statistically, the patient will get depressive.

Statistically this.... statistically that.....!!

But are we, people, each individual statistic???? The diagnose from the doctors is only statistic. The diagnose what I get from observing my husband journey through this, is my diagnose.

After being diagnosed with GBM grade 4 (April 2010 )he went into surgery that took them more then 7 hours, ( the longest day in my life ). Radiation combined with chemo Temodar oral pills followed for the period of 6 weeks.

After a break of nearly 8 weeks chemo treatment Temodar oral pills followed being, 5 days with pills and 23 days without, blocks of 6 months.

One month after on the 4th of April 2011 a new MRI was made. We went to the hospital for the outcome of this scan on the 11th of April 2011.
They had three scans showing us, being: the 1st one before surgery, the 2nd after surgery and the 3rd after radiation/chemo treatment.

It was clear that his tumor on the 1st scan was very, very big. The 2nd scan showed us way much less,they took out most of the tumor which had the contain of 1 and a half espresso cup!! A GBM tumor is a mass that is very "slippery". The 3rd scan showed us that the left over of his tumor has shrunk. But they have discovered a new "spot" of 3 cm just below the old tumor.
At this moment it is not clear if this could be side-effect ( necrosis ) from the treatment or a new tumor. Next scan is scheduled at the beginning of June, that should tell us more.

What we do now is to prepare, somewhere on the back of my brain , for the worst, but we are hoping for the best. And that is what I hold on too for the moment. Our life is for over 1 year without schedule or planning, step by step.

Beside the conventional treatment, we give him a homeopathic treatment which could also be adding to his "good" condition.

I am sure, that a positive attitude, keeping the patient busy with as much daily tasks, giving him to understand that he is contributing in daily life, even when sick, surrounding him with so much love and only good energy ( music he loves, going to concerts, museums, playing games, making him laugh while watching a good comedy movie, any alternative therapy he feels good with like Reiki, Quantum therapy etc.etc. good nutrition , walking as much as possible, smelling the world outside ) can really contribute to his well being.

We are in the fortunate position of being surrounded by so many good friends, who became like family to us in this difficult period and family who became like friends, supporting us and enabling us to travel around, to offer us a good time, and we are extremely happy that he himself said on the 6th of April 2011 in the evening, while in bed next to me:

"We were given another year, a whole year."

We, the people next to the patient,should try not to show our desparation, do not talk too much about the cancer, only when the patient opens the subject himself, do not give up hope, do not listen too much what the doctors tell you, do research yourself and try out whatever "speaks" to you. This does not mean that when I am alone I break down in tears, it is hard for the people around him to see that he is changing. It is in the brain you know, the hardest thing for us is to see these changes. But one thing that is very important as our daughters told me: "we are happy that he is at least not suffering from pain ". We have to try to keep positive, it could always be worse and last but not least:

Many times cancer patients are given a certain time left to live. Well, we never know when is our time, nobody knows. And may this be clear to us: We do not have such knowledge and we are not statistic!!!!

for any further information about the homeopathic treatment we give to Panormitis, my Greek husband, open up the link below. And again, we will never know if his "good condition" is to be credited also partly to this homeopathic treatment, but it is certainly worth a try!!!

info@pbhrfindia.org ( it is also available in USA )

For all of the people fighting their sickness, keep on hanging in there, do not give up!!!

deja98408's picture
deja98408
Posts: 12
Joined: Apr 2011

I love what you wrote. I took care of my father while he went thru his treatment for GBM4 a couple of years ago. I was diagnosed in March with the same thing. . . I have been going thru radiation and chemo. One more week left of radiation and chemo then i get a break. Then the standard 28 or 30 day rest then double temodar for 5 days. I refuse to be a statistic. I am going to beat this thing. I dont understand why this happened, i guess i am not meant to. I just keep a positive attitude. I have 3 kids and a husband and want to be here for a while. there are people who have lived 25+ years with this tumor. If they can, so can anyone else. I went and saw a naturalpathic doctor today who specializes in oncology. He is starting me off with only a few supplaments. I do feel all alone sometimes. I mean i feel normal but then i dont... maybe i will feel more normal once my hair grows back. Well my prayers are with your husband. The mind is a powerful thing. I just keep telling my tumor... you cant live here, you cant live here.... Well, fatiuge is catching up with me. I am going to go take a nap.

panormitis
Posts: 16
Joined: May 2011

dear deja,

Thank for your reply and warm words.

I do recognize a lot in what you wrote. Also Panormitis had lost his hair, but has got it all back in a different way, thicker and darker then ever!!! He had a "full moon face" from the dexamethazone last summer but after slowly reducing this medicine his face went back to normal. I remember that after surgery he had a different character , was very much inside himself, no interest in the world around him, not even in his own kids. Confused names very easily and had a short memory problem. All this is nearly gone now, although I notice that he still has a short memory and confuses sometimes names, but only when he gets very tired.

He regained his interest in the children, politics, art and as yourself....... in cooking!!! He used to cook from time to time, but now he is turned out to be an excellent chef, and cooks nearly each day. My daughter who is still at home with us, and myself do the cleaning after wards.

I have been checking out quite some sites now, and also I am really surprised by the amount of "long survivors" ( I hate that word ). Anyhow, it gives us hope and is interesting to read about their experiences. It is actually the first time that I am writing something on a site about our situation. I would really like to learn more about your naturalpathic dr. what sort of supplements did he gave you? Whenever you feel like it and have the energy to write I would love to keep up with your story, although we are on the other side of the ocean, I do feel we are connected. All of us on this site, and funny enough it does make me feel good to know that this exists. Take care of yourself, and whenever you are lonely you can always write down whatever you want, how you feel. It can really help. All the best and wishing you and your beloved ones a nice Sunday.

warmest greeting,
Henriette

deja98408's picture
deja98408
Posts: 12
Joined: Apr 2011

There is a noticeable difference in my personality. I used to talk alot! Now i am kind of reserved. My husband always asks if I am okay... it gets annoying sometimes but I know he is just worried. So, the naturalpathic DR. said that Zinc picolinate 30 mng 2x a day will help my taste come back. He told me to take it until my taste comes back then i can stop. Boswellia one 250-300 mg capsule 3x a day for swelling, berberine one 200 mg capsule 3x a day for swelling. That is all he prescribed for now. He is easing me into everything. I was worried that I would be taking a million different things but, he doesnt seem to think its necessary. He did stress free range meat. Nothing injected with hormones etc... lots of fish and fresh fruits and veggies. My Oncologist told me no fresh but the naturalpathic said go for it. So, i had a fruit bowl a few minutes ago. I couldnt really taste it but just to know I was eating it was good enough for me! Natural dr also said greek yogurt, almonds, pumpkin seeds, brown rice, dried fruit grean tea all things i need to be eating. Future things he may want me to take will be coriolus (turkey tail) mushroom extract for immune system support. Quercetin(it doesnt say what that is for), curamin (inflammatin and potental anti tumor benefits), selenium and green tea extract. He ordered a blood test for serum vidamin d and sedimentation rate and c-reactive protein. He also suggested i get these books which i ordered from amazon. Food rules by michael pollan (eat food. not too much mostly plants) also Anticancer: an new way of life -0 David Servan-schreiber MD. I think i paid like 40.00 for the books. He stresses exercise 20-45 minutes a day. I am working to it. I am lucky not too many side effects but, my knees feel weak so, i dont really get on the treadmill. I usually take a nap around 2 but have not had to lateley. I have to be done eating dinner by 6:30 because i take my temodar at 9:30. I have to take my temodar on an empty stomach so, i usually get up at like 3 or 4 am and eat cereal or something then go back to bed. I am determined to beat this. I just keep thinking postitive. This really does suck. I dont like that I am not the same person I was before all of this. I am trying. I have not joined a support group. I dont know how i feel about it. I mean i know there are others going thru what I am going thru... i just well, i dont know. They say they dont know what causes the GBM... i find it strange that me and my father have the same tumor..... just strange.
We may be far away from eachother but we are connected in a krappy way. But hey, we can make the best of it. Just keep telling ourselves we are fine we are fine. The mind is a very powerful thing. I dont go to church but I do pray most of the time. I beleive in miracles. They happen all of the time. My mother in law has a dear friend who was diagnosed with a cancer and was told she had 3 months to live.... that was 25 years ago. She is cancer free after surgery. We just need to stay positive and keep a good attitude. Tommy the tumor cant have my brain! I need it. Thank goodness they took out the part of my brain that I apparently dont use too much. One thing i have noticed is that some of the shows i used to LOVE... dont hold my interest like they used to. I love the show supernatural, its hard for me to follow sometimes. I also cant wait until psych comes back on (usa network) I love that show. Same with sons of anarchy and there is a new show called wilfred that looks funny. Well, I am going to go have a seat. Feel free to email me anytime deja98408@msn.com. I know i am jumping around alot i am just writing as things come to me... one thing that is kind of irritating is i think this is the dexamethasone.. but my vision gets grainy sometimes so on my right side i dont have perhipial vision sometimes. Its kind of annyoing.I am just lucky that i have no headaches, nausea etc.... Well, lets keep in contact.

palmyrafan's picture
palmyrafan
Posts: 398
Joined: Mar 2011

Let me start by saying that I hate statistics; especially when doctors try to lump us all in the same boat. "Well statistics show...." or "Statistically speaking...." or "the statistics haven't shown much promise".....yada, yada, yada....

When a doctor starts quoting statistics at me, I just glare at them. I interrupt them and remind them that I am not a statistic, that I am an individual and deserve to be treated as an individual not a number or statistic.

Statistics be damned. There are too many long-term survivors who weren't expected to survive surgery ~ myself included ~ but we have.

Peace.

Teresa

panormitis
Posts: 16
Joined: May 2011

Dear Theresa,

That's the spirit, you said it!!!! And this is what they should respect and be more careful about, don't you think. But what I always wonder is: do they have anything else, don't they ever get in touch with these exceptional patients?? I have to be very honest, here in The Netherlands they do not talk about it, they do not give you a "time" anymore, they tell you that it is difficult to say, when asked. Only when "we" would push it and ask for a more specific answer, then they give us their statistics. So , I just do not ask anymore and tell them about the exceptions and that my husband is going to be that exception. Even if it would mean a 1%, some one has to be that 1%, right???

Take care,
warm regard,
Henriette

palmyrafan's picture
palmyrafan
Posts: 398
Joined: Mar 2011

I agree.

The problem with statistics and giving patients time limits is that then the patient feels that is all the time they have left and may decide not to fight their cancer. That is WRONG!!!!

Some doctors are now recognizing that they can't tell a patient how long they have because they just don't know. Others won't say anything at all until and/or unless they are pushed by the patient (or familY) to give a time limit.

I can understand a patient asking "what's my prognosis" but never assume that your time is limited. No one knows how long we have, not even our doctors. I think that if we feel that we have a chance, then we should fight it as long and as best as we can.

Statistics be damned.

Peace.

Teresa

mgreggsmith
Posts: 22
Joined: Mar 2011

Dear Mrs. Panormitis,

I agree with you about statistics - they are just numbers. They are not the 'story' of any individual. As you may have read on this board, I was diagnosed with a grade IV glioblastoma multiforme in October 2006. My neurosurgeon is Johnny Delashaw at OHSU in Portland. My neuro-oncologist is Edward Neuwelt. Those to men are first class. But my initial diagnosis was dire. One of the nurses pulled me aside and said I didn't have long to live and if there was anything I wanted to do in life, do it now. Some of that initial period is a daze, but someone opined that I had somewhere between 3 months and 18 months to live, with 12 months begin a good guess. I had surgery, radiation and I am still on a monthly five-day course of Temodar. When my first MRI came in clear, the docs were very pleased. Then the next and the next and the next. All clear. I don't know why I'm still here. The docs don't know why I'm still here. But I am. It has taken me a while to relax and just live my life rather than building up stress until the next MRI - and then feel elated - briefly - after another clear MRI. I've read all the books, eat well, exercise moderately - and none of that may have any impact on my fate. It's all a mystery. However, I suspect that anything that improves my immune system is useful. But I don't know how useful. I think the important thing is to surrender to the reality that all of us, someday, will die. But we don't know when. Until that day, live life fully.

Gregg

hope4GBM
Posts: 7
Joined: May 2011

Great to hear your story! My husband's doctors are also super guys, they have been wonderful. Have you been on Temodar for 5 years? He is on Temodar and also a trial drug-Zachmia. He will continue the 5 days on and 23 off until December. He takes the trial drug every other day. After Dec. he will just be on Zachmia if all tests stay the same with no new cell growth. He has had 2 post- op MRI'S that have been clear. Sounds a lot like you- what area was your tumor in?

I like your attitude- I'm staying positive and trying not to think WHY.
We don't know what tomorrow will bring but you inspire me to get through this stage of whats next? We are still in shock. I haven't relaxed yet but sure hope to and be as strong as possible for my husband.
We are glad you are here for us!
I wish you many happy years ahead- God Bless!

hope4GBM

mgreggsmith
Posts: 22
Joined: Mar 2011

Hi Hope4GBM:

I've been on Temodar since January or February 2007. At one point I asked my neuro-oncologist whether I could stop. He said "NO!" It's working. Don't tinker with it.

I haven't heard about Zachmia. But I'll bring it up after my next MRI and meetings with my docs. Right now things are going well so I don't change anything. When I was first diagnosed I was frantic about finding a 'cure.' I contacted people in Los Angeles, San Francisco and Seattle about trials. I backed off when it was clear to me that the trials were all experimental. The docs were trying things and I would have been a guinea pig. I decided to stay with stuff that had a track record.

My tumor was on my left parietal lobe. Luckily it was on the surface and easy to get at.

I know this may sound counter-intuitive, but we might consider this situation a gift. We are now forced to consider what is really important in our lives. I'm not religious but I think the only thing that really matters is love. So be a beacon of that - and don't worry about the rest. I'm going to try to find an Arab poem I found that gave me great comfort. If I can find it, I will post it.

Later...
Gregg

mgreggsmith
Posts: 22
Joined: Mar 2011

REMAINDER OF A LIFE

If I were told:
By evening you will die,
so what will you do until then?
I would look at my wris****ch,
I'd drink a glass of juice,
bite an apple,
contemplate at length an ant that has found its food,
then look at my wris****ch.
There'd be time left to shave my beard
and dive in a bath, obsess:
"There must be an adornment for writing,
so let it be a blue garment."
I'd sit until noon alive at my desk
but wouldn't see the trace of color in the words,
white, white, white . . .
I'd prepare my last lunch,
pour wine in two glasses: one for me
and one for the one who will come without appointment,
then I'd take a nap between two dreams.
But my snoring would wake me . . .
so I'd look at my wris****ch:
and there'd be time left for reading.
I'd read a chapter in Dante and half of a mu allaqah
and see how my life goes from me
to the others, but I wouldn't ask who
would fill what's missing in it.
That's it, then?
That's it, that's it.
Then what?
Then I'd comb my hair and throw away the poem . . .
this poem, in the trash,
and put on the latest fashion in Italian shirts,
parade myself in an entourage of Spanish violins,
and walk to the grave!

Mahmoud Darwish
(Translated, from the Arabic, by Fady Joudah.)

The New Yorker, May 14, 2007

mgreggsmith
Posts: 22
Joined: Mar 2011

Sorry.

I don't know what the asterisks were about when I copied the poem and pasted it into this format.

The word was "wris****ch."

Gregg

mgreggsmith
Posts: 22
Joined: Mar 2011

Dang. Try again.

This system will not accept the word for the clock you strap on your forearm.

Bizarre. Just fill in the asterisks and you'll figure it out.

Gregg

hope4GBM
Posts: 7
Joined: May 2011

It was great to read your story. My husband (56) is 7 months out of GBM surgery and still on treatment. He has had 2 MRI's that have not shown any new cell growth! We too are blessed with a wonderful support group - family - friends and doctors. The location of his tumor was in his Right Temporal Lobe. The surgeon was very aggressive and removed about a lemon size of that area of the brain. Considering what he has been through he is doing wonderful! We had our 35 wedding anniversity in April. I'm hoping there are more survivers out there to inspire us during this time of great adjustment in our lives.
Doctors have said there are survivors out there 5+ years- it would be great to hear from them.

Keep in touch

hope4GBM
Posts: 7
Joined: May 2011

It was great to read your story. My husband (56) is 7 months out of GBM surgery and still on treatment. He has had 2 MRI's that have not shown any new cell growth! We too are blessed with a wonderful support group - family - friends and doctors. The location of his tumor was in his Right Temporal Lobe. The surgeon was very aggressive and removed about a lemon size of that area of the brain. Considering what he has been through he is doing wonderful! We had our 35 wedding anniversity in April. I'm hoping there are more survivers out there to inspire us during this time of great adjustment in our lives.
Doctors have said there are survivors out there 5+ years- it would be great to hear from them.

Keep in touch

4theloveofmysis's picture
4theloveofmysis
Posts: 248
Joined: Apr 2011

Would like to hear from those suvivors too. We are only three months in to this. My sister has GBM. Got 29 out of 30 radiation treatments. Had to miss a avastin treatment due to low platlets. Recieved platlets only to get an infection at the port site. Did someone not clean that site well enough before putting the needle in????? More than likely...Well, have to move on. She went septic from that and is in the hospital. On the road to recovery. As been a long week. The counts are slowing coming up. We are on the month break from the temador. Feeling scared not being on anything to fight this GBM and not knowing what it is doing in there right now. Praying that it went away. Just hanging in there waiting for the infection to clear up.

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