25 year old student has brain tumor - Glioblastoma

KilaliAnju · Apr 9, 2013

Hallo Ladies,

I need some advice on an extrmely sad and urgent case. A boy in my friendcyrcle got recently diagnosed with a Glioblastoma multiforme WHO IV right, frontal, he is 25 and already got epeleptic attacks it is one of the most malignant tumors...he had first surgery, then they insert some nano material and startet chemo after that the radiation will start... he lives in different city then us and is naturally scared, we try to joyn him cyrcularly one after other, his mom came here to germany but she doesnt undersand german and her english is bad.. she gets obviously more and more tensed.. had to watch her baby getting epileptic seizure :drowning we are now thinking about what is the right to do as we as friends have to take some decissions.. his father is crying a lot and mother is overwhelmed with shock but trying so brave her best.

We read it is deadly and the medium survival not long.. from months to 4 years in seldom cases... we dont know wether he knows as he wont speak anymore... he is in depression.. we dont think his mom knows.. we try to not tell her.. is it wrong we dont tell her? Are we bad to hide from her? We are afraid she will finally break down...

We are not sure if we can bring him to India as of the epileptic seizures and pressure during flight for brain... we will talk to doctors tomorrow.. medical help here is good but he needs home and own social invironment we think.. are we wrong? How much risk shud we take to shift him? His mother is not used to things here and is in confusion with system...

shud we talk to him streight about the tumor? I suggestet one of our closest friends to try to find out while talking how much he knows.. coz we are both quite sure he does.... I feel we need to handle extremely sensitive and give him space too

Im in high concern about his state... has anyone experience with such a kind of tumor? Does anyone knows good cancer centers in India (he is from Pune)? Are doctors just trying to lengthen his life? If yes isnt it then really urgent to bring him home? What if they forbid him to enter flight coz its to dangorous? Are there other options then like special flights for very ill people?

Im very much consernd about his family too... he has a younger sister whom is a cute child and loved him soo much.. everyone will be in shock and traumatised.. what kind of other help u suggest other then friend and family? I was wondering if we shud contact councellors / psychologist for support.. psychological support and medical treatment are not uncommon in suc cases we just not sure where to get...

Im very thankfull for any suggestion..

nonu · Apr 16, 2013

Sorry to hear about your friend Kilali Anju. Glioblastoma multiforme is one of the most aggressive cancers overall with median survival of 15 months with the best of treatment. seizures (epileptic attacks) can be a symptom. I shall answer your question in parts.

1. The seizure : - the cancer treatments may not make the seizure go away. It is due to a foci in the brain that is producing electric sparks. It can be also from the operated area but more commonly from the remaining tumor cells. So the thing to do immediately (today) is to talk to the oncologist to increase his seizure medications. The thing about seizure medications is that no one dose controls all seizures .the dose has to be adjusted upwards till a balance between effect and side effect is obtained and also may be add 2-3 drugs together. It takes approx 2 weeks for the new effects to completely kick in but you would definitely see changes. What the doc could do is to admit and give injectable medications and see what doses work best and then discharge in a day or two with oral medications. It is important that the seizures be controlled that he has a good quality of his remaining life.

2. depression- depression is very commonly associated with this tumor and its treatment. If your health is govt funded, talk to the oncologist for referral to a clinical psychologist/psycho-social oncology program/psychiatrist. it will help him immensely. Also would improve the morale of the family also. The social worker in each cancer hospital is trained for this exact scenario. If she has any issues with the language, a translator by the hospital (or yourself) can help the meeting.

3. Treatment - it is preferred that patient remains close to home during treatments. The fitness for travel depends on patient condition .SO if the seizures are controlled, may be he would potentially be fit for travel. But never can be sure unless he is seizure free for atleast a week.

It is important that the patient knows about his condition and get involved. In the west, it is unethical if the doctors don't explain everything to the patient. I understand your concern. In india and maybe that part of the globe, the best treatment for brain tumors is from Tata memorial hospital,mumbai by Dr Rakesh jalali / Dr Tejpal Gupta and team. He is also open to emails for suggesting help as he sees many internaitonal patients also with good standard of care meeting international standards. he has got doctors who have trained under him in pune whom he can refer if needed. Check out his email from the tata memorial website.

The radiation may last apprx 4-6 weeks so either do it before or after radiation. but it would be best if he gets his treatments early. But it is important that he has a good support system. so take care of points 1 and 2 which can be done early. Talk to your doctor. I am sure he would be happy to help when he hears this scenario. Before concluding, would like to add that treatments in pune would be private based and hence costly with drugs costing a few lakhs.

Hope this helps!

Bond001 · Apr 16, 2013

Hi,

you can take him for consultation @ HCG hospital......i have seen many patients with tumor taking chemo from HCG.....just fine their branch closer to your place and take a second opinion.

glascobaby · Apr 19, 2013

Hi Kilali Anju,

Very sorry to hear about the plight of your friends family. As personally, in our family a couple of years back my BIL has been diagnosed with the same and had been through with the surgery. (he is spaced out in mumbai, so he underwent to the hospital there itself)...

How can I help you or pour our personal experience suggestion to help them out....

1. My BIL was 33 when he was diagnoized with. After the surgery he was totally bedridden for above 1 and half yr. He couldn't speak (clarity of the words were missing, nerves were not so co-operative), he couldn't walk on his own as usual, the parts of below the hip over to the right side were totally paralyzed, lost his taste bud, experienced double to triple vision if he sees a person or anything, so totally the operation itself is so critical, We could just feel that he just passed through with a great will, and even more physically the sufferings he has undergone.

2. Coming to the family.....they will not be prepared or anticipate to face such situation, and it will be totally horrible and wordless to say for the ppl who has given birth to them, and near n dear ones. And as he has married and has a kid, life is lil more cumbersum to face challenges for his wife.

so what all the things require.....

1. Check out the family has enough funds to support him. Not only now, after surgery and treatment also ...he require proper physiotherapy care and enough funds to support him for another 2 yrs of time.

2. Mainly the head of the family, mom-dad must be very supportive and encouraging and need to induce the will power in him to come out through from this bad stage of life.

3. At this time, your friend will be really down and down than we think of and after the surgery once he experiences all the physical difficulties, he will get a feeling that the life is sore. Its pretty usual. He just need to understand that he has to undergo equivalent rebirth process. He has to think himself as a new foetus...he has to come through everything and need to reach the 1 yr completion of walk and 3 yr completion to talk speaking well as like the development process of kid.

4. Avoid most of the relatives n friends who just always make negative comments, remorseful statements whatever make them weak mentally.

5. There will be so much of mood swings after the surgery, there temper will not be in limits...and sometimes they dont realize what they are doing upto nominal recovery phase.

6. If his vision is clear, he can read himself for a lil time or ask some person or friends who can spend time with him to read books for him. The words he hear through his ears is a great booster to go through this rejuvenating evolution of him.

7. The hospital and home must be near, so that the post treatments and the same doctor can measure his developments.

8. Give him a food what he prefers.....mainly the person who takes care of him shouldnt cry about his plight before him, shouldn't lose interest in serving him, they must be a greatest mentor and motivating factor for him.

9. Definitely it does take time minimal of 4 yrs of time to recover at least to a better stage of life.

My BIL is a very strong personality by nature, though he had experienced all this now we are really proud to say that he can walk with the support of walking stick, he can read, he can speak well (though lil more clarity is required), he mostly tries to do all his work on his own somehow, and goes to office from this month onwards as a full time.

PATIENCE, TOLERANCE, W ILLNESS, PRAYERS, PUSHING FACTOR TO MAKE THEM A STEP FORWARD can only be the part of solution for this not only for the concern patient for the entire family too.

My humble prayers to him and his family.

KilaliAnju · Apr 29, 2013

Hallo nonu, Bond and glascobaby, thanks a lot for your words and information, it helped us a lot. And i want to apologize for my late reply, a lot is happening here and we are half the time in a confusion state.

@ nonu: Thank you so much for all the detailed information, it was of huge help. He gets pills against the seizures which are helping good, but he is as we are too a bit scared that one can happen again. There are good doctors in the hospital and we still put hope in those new treatments with the nano material. He is undergoing the chemo therapy now and we decided to send him back right after before the next treatment, the radiation will start. We will make sure he is min one week seizure free, thanks for suggestion.
Yes the depression is indeed a huge problem, and he still refuses to talk about what he feels or even understood about what is going on. He is refusing treatment against depression and the other friends are not happy about making him talk to a psychologist too... so with those suggestions im on a single position. Second problem is language and religious differences as it is a catholic area where he stays. So right now there is no real support or care for his depression to be honest.

He is staying at his home in Germany recently with his mother together and we friends try to take care too. I talked to the friends who have been there when he got the diagnose and they did not understand that it is not curable and stick to the point that the doctors did not informed about that, even i was guessing they must have told him somehow in between becoz i guess they have too as you mentiond.

We are in contact with doctors from the hospital in Pune and ask them for advice recently. We try to contact the team from the Tata hospital you suggested too, thanks again for the information so much.

@ Bond: excuse me that i did not understood properly what an HCG hospital is. He is recently in one of the most modern hospitals in Germany with research center and we planned to shift him to Pune where he comes from. Could you please suggest any HCG hospital there?

@ Glascobaby: Im so sorry to hear that your BIL had to go through that, you are right, it is indeed a very difficult nd tough time for the person and the loving family and friends. Thanks a lot for sharing your story here with me, it meant a lot to me. Its good to feel and know we are not alone and others understand us.
My friend can walk and talk even he is week and loosing power and strength more and more, but that is more due to the treatment with chemo and other medications then the surgery itself. They tried to remove the tumor and inserted that nano material. Did they tried that procedure on you BIL too? It must have been shocking to see him in such a condition. The worst for us is to see him getting weaker and the seizures which are horroble.
You are totally absolutely right, its a nightmare and its impossible to prepare for such a thing, can i ask how you informed the family? And how you handeld the mother? His mother is still not aware of the seriousness of his condition.
to point 1: We plan to leave him here for a while, physiotherapy is right now not required but he gets such help here for free as he has an health insurance. You are right, we already talked about the financial part of the story when he will be back home...
Point 2: That is exactly the problem. He himself is a very sensitive person, he used to be the cutie kid of our friendcyrcle and a total oversensitive and sweet person, more fragile.. he has that from his parents whom are both very sensitive persons as well, his mother is not strong enough to support and bear that nd his father cried lot of tears.. so we are afraid they need more support themselfs and wont be able to keep their tears away from him, thats why he is not willing to speak really i guess...
Point 3: he already had the surgery and is having chemo now.. he realises all the changes in his body and strength.. he is scared and depressed.. it changes from day to day sometimes, some days he eats and is more normal some days he is like a ghost.. in his own world, he refuses to be one second alone due to fear of seizures. The thing is as far i understood that it is not curable.... he will most probably NOT live in 3 years anymore.. so how to encourage someone to fight who knows he will die? :shock: May i askk what kind of tumor your BIL exactly had??? did he really survived a Glioblastoma?? Since how long??
4: yes we try that, as for now, very few people are informed about the situation, most we tell its not thaaaat bad thing and its curable. We try to keep him away from such things, but we dont know how long that will work.. im afraid of the reactions when people will find out he will die.. all this sad shocked faces.. its difficult.. i dont know how he will feel if everyone looks at him like a dying person...
5: yes, he already has that.. but no temper.. but lots of fear... how did you handeld that?
6: he reads and watches movies and talks to closest friends if he is in the mood he follows cricket nowadays... but he is not opening up himself...
7: it is near and we can reach easily the doctors check him frequently and we can call emergency in case of seizure or anything else, they will reach asap.
8: yes the mother is cooking for him now, but she has problems to get adjust here to everything like what she can get and what not, but he tries to eat, even though he loses weight. She is pampering him a lot what helps him greatly i feel.
9: i guess to be honest in 4 years he wont be alive anymore.....median lifespan is much lower then that... even higest expectations are maximum that.. and that stage he wont be good condition...

Im so glad to hear that your BIL can do all this again and he is such a strong person... you can be so proud of him :bowdown what a fighter :bowdown the problem of my friend is that we all describe him more as weak to be honest, we love him we dont mean badly... he is just a very very senstive more childish person, childish in the sence of innocent. He doesnt seem to fight...

Please let me know what kind of tumor in which part your BIL had, was it really a Glioblastoma, so that means he survived!!! I will include him in my prayers, he is really and inspiring person.

Can i ask you one more thing? was he married when he got diagnosed? Becoz first bad talks here startet such a serious problem will coz him trouble on marriage market (even that is redicilous for several reasons .. it is not curable, ppl are idiots to bother him with such things in that situation it makes me angry).

Thanks again all of you for your support, suggestions, help and informations.. im really thankfull.

KilaliAnju · May 6, 2013

Hey everyone, wanted to give an update after your sweet caring replies and good tips.
We will shift our friend to back home to India this week. He already lost his eyesight and is doing quite bad to be honest. We informed his mother and she is crying a lot, but in front of him she keeps her head up and tries all possible to be strong for him. His family will receive both of them in India and the friendcyrcle collected money together for his treatment to support the family. Thanks again for the help and information.

glascobaby · Sep 1, 2013

Hi Kilal,

Extremely sorry for not keeping you update, wasn't here for some duration.

1. He is lucky in one way to have friends like yours, Which friend circle now a days comes forward to volunteer themselves. Hats off to you...

2. yeah, my BIL had been engaged with lot of mindset counselling sessions for him and for his wife too. (Meta healing and meta medicine sessions)

3. He has read lot of books or make others to read books for him like baghavath gita, vivekananda speech n stories, and lot of positive stretch of books to keep his thinking as afresh.

4. Yes, he had the same problem followed with procedures of chemo, radiation and surgery. It was developing in his brain cells from 2004 and we found it as seriously around 2010 august. He was into more advanced stage by so. The surviving rate is very less as you suspected, but dunno....what makes some people to come over all this. (We feel his will power, his belief on almighty, and the love he has on kid and wife...)

5. Guess, their instinct nature from birth also plays a vital role here. We have gone through all his temper and emotions with immense patient. Still goes through at times (attitude-wise improved a lot ...)

6. Yeah, he got married in 2006 and got a kid by 2008, they have lot of understanding problems in between after surgery, which we had taken lot of steps to drill positive thoughts and explained, and made her realized how important she in his life now.

7. Still, he has lot of problems in eating habits (he just likes to eat all the fruits, and dosa (2 nos), no spice at all, pinch of salt alone)...., no energy at all for a long walk or to do work continously, his left side below the hip has no senses, and many more ....But on the whole, he manages himself with a walking stick or with the balance of wall....

Def' the life will be too hectic and un digestable for his wife. But they have to reciprocate the thought process, what if that happened to her!!!!? ( As a girl/woman, I admit - its a very difficult and odd moment of her life), she has to blossom new spirits in him. 3 yrs or 3 months or 30 yrs...I deeply feel for him and keep himself in my prayers to have best recovery asap.

Note: Due to my delayed reply, I have read that his mother came to know, by recent. But at first, we have informed her as like, he is having a little problem to sort out with. Made her to visit his place before the surgery day. After surgery only, she has been revealed fully.

Once again, wish to say ...u are awesum gal , his family is lucky to have you all ...