Round II - This time I will KILL IT!

[pchang]

I found these 2 trials:

http://clinicaltrials.gov/ct2/show/NCT01865162?term=glioblastoma&rank=2

http://clinicaltrials.gov/ct2/show/NCT02010606?term=glioblastoma&rank=1

I listed them in the order I think they might apply to you.

This one is done and has results, but I could not tell if it was better (but I can tell that it was considered safe).

http://clinicaltrials.gov/ct2/show/NCT00504660?term=glioblastoma&rank=6

Maybe you can ask your doctors to look into these for additional treatment ideas.

[Pekka]

pchang, thank you once again! I will research them today for sure. It's weird how my own doctor does not even mention trials nor promotes to try to find them. This particular disease has its benefits, it's the most common form of brain cancer, so research tends to focus on it, and my doctor does not seem interested in it. I know it's not the whole truth, but I just wonder why ... my natural inclination would be to take a strong focus on the latest developments and see if any of them would be of benefit.

molly bloom, Sure, it's just that I've been advised to not take any supplements during chemo, because it might "affect chemo negatively". Meaning the supplements would somehow bound some of the chemo drug itself and my body would receive less chemo drug....

[Pekka]

pchang, ok both studies are somewhat familiar to me actually, the second one is more interesting to me in this particular situation. Mostly because I can do the first one myself, and the second one has shown promise. Avastin kind of failed on Phase II, or at least it did not show the promise Phase I did.... but thanks, the second one looks very interestign!

[Alexander's Horse]

glad I checked in and you are going well Pekka!

[Dinner]

I've been thinking we need to get on a vacation WITHOUT the kids SOON, or then at least I need to go to stay at my moms for a weekend, or 4 or 5 days or so, so I can relax. Read a book. I can't read a book because there's constant shouting or crying going on. This is bad for my CPU.

This is an excellent idea. I will help you and your wife reconnect and remember why you fell in love with each other to begin with. Heck, it's hard to keep the spark alive in a couple with small children even in the best of times so taking a weekend off just as a couple might be just what the doctor ordered so to speak.

[Pekka]

Excellent idea but don't know how to fund it. Just found out my wife has been using our mortgage to spend it on stuff not related to the house. It wasn't a HUGE amount, but 3000 EUR anyway. And on stuff like food etc, which she is supposed to buy out of her own salary, since I pay the house and every other bill that is not food. A BIT disappointed I guess.

I confronted her and she said when she gets stressed out she gets in trouble with money. I KNOW! She has her cards maxed out anyway and now she got me into it as well. Too bad I don't have money because my salary stopped on January. So we're in deep doodoo financially. That 3000 EUR would have paid for an excellent vacation right next week! Now we can't go. I think it's unfair because she can go in 40 years where ever she wants to, I probably can't. BUt I won't pay that 1500 EUR to the bank, she pays the whole amount for sure. Too ad she can't accumulate that kind of moeny because she is a credit card person, going from pay cheque to pay cheque. ANd spending my money. There is no our money, there's jsut her money, my money is her money as well, mortgage seems to be her money as well.

Trying not to blow a vain in my brain right now. 3k and not even mention it? Of COURSE I WOULD NOTICE!!!! At some point.


Well, she is obviously very ashamed and probably feels very bad, and I know for a fact she has a problem so shouting probably is not the answer here. For me, I need to stay calm and relaxed for my own health, she can find a way to make it better, we're married so she can - this time - find her way to make it better. Not like it's my turn to do so. I'll accept it then. If she makes no effort, she can then jsut pay the money back in full.

[Pekka]

To tell you the truth, if we didn't have kids, considering all the mess in this relationship, and if I wasn't this sick, I'd divorce her for sure. I'd rather be alone. Less drama, less stress, I just can't rely on her. She's angry all the time, too. There's no closeness, nothing. We're just partners at this time, I accept being partners though.

[notyoueither]

Really sorry to hear about that Pekka.

[molly bloom]

molly bloom, Sure, it's just that I've been advised to not take any supplements during chemo, because it might "affect chemo negatively". Meaning the supplements would somehow bound some of the chemo drug itself and my body would receive less chemo drug....

Well then don't take the vitamin oils orally, just apply them to your skin. I suppose if you like oily fish you could eat more in the way of sardines and mackerel and salmon and haddock...


Anyway, keep staying imPekkably you.

[Pekka]

5 more days of radiation and then it's over!

I'm definitely feeling lots of effects of it. Side effects. None of which was mentioned in any way by my radiation doctor. I'm getting a strong feeling that our cancer doctors never tell anything, they just tell you where to go next. Vital information that would have been nice to know:
1) If you ever want kids, you might want ot consider freezing some sperm now.
2) You might lose all the hair in the area radiated, so if you want a wig, go and find one now.
3) Yes it might hurt, it might hurt a lot and you'll get rashes and bruises, even burns and some areas might swell up.
4) Yes it will cause like a million other side effects, possibly. Extreme fatique, and yes, it might cause new cancers later in life.
5) Overall weakness. I feel heavy and weak, and in a cloud.

NONE of these were mentioned, except "you might get a bit tired at some point". That was it. I'm thinking now all my doctors are liars. Why? Because they KNOW better, and yet choose not to tell me. I tihnk they're narcissists, who odn't want to get into a "debate" so the patients then refuse to go to their chosen method and weapons... but misleading and misdirection is definitely not the way to do it. It's called dialogue, talking, communication, giving information. I'd still have undergone this anyway. It's just that I trust them even less now. And the situation in this regard was pretty bad before, liek my oncologist withheld the information that my tumor was growing for 2 years. That's pretty bad. This kind of stuff seems to be the modus operandi. Not that they aren't doing the best possible job, but I'd like to know and be involved as well. Now I can't protect myself or even find out what I want because I'm not told about things that would be easy to just say or give a pamphlet or anything. Now I google. And no they aren't helping me to find any clinical trials because "there aren't any". Another lie. Lie lie lie lie.

[Kidlicious]

"You might feel a little pressure" - Major Payne

[Bereta_Eder]

Pekka,
I don't know if it's applicable in your case but about the hair loss, there is a cap (like a small hat) that you wear during chemo.
The cap is in freezing temperature and freezes blood flow to hair follicles. So chemo drugs don't enter there.
This way you can keep your hair. Maybe you could ask the doc if it's applicable in this case too.

[pchang]

Hang in there. Only a few more days to go.

[Pekka]

I really don't mind about the hair...I jsut want this to work. It's only few days left and then few weeks and then the real pressure starts - as in "did it work?"... I'm getting really anxious again... I don't want to hear the news of "sorry, it looks like there hasn't been significant benefit of this treatments".... and then there's nothing left basically. Except clinical trials, of which I have to apply myself since no one has provided any help (except Polytoners, curiously), but no one helps me, even when I've pleaded to have help. It's really makes one feel lonely - when you're begging for your life and they're replying "good luck" and turn back on you.

[molly bloom]

It's really makes one feel lonely - when you're begging for your life and they're replying "good luck" and turn back on you.

Many people can't deal with the reality of serious illness- especially one that they think could affect them. And medical workers unfortunately aren't magicians, just human like the rest of us.

Stay strong Pekka. The dark days pass.