My chemo diary.

reply to post by boymonkey74


Cheers mate, thanks for the kind words.

Originally posted by 1beerplease
reply to post by woodwardjnr

 

Good day woodwardjnr, i am sorry to here of your illness and wish you all the best on the road to recovery.

may i please ask what your age is ? how long you have known you've had cancer ? and how long have you been on this 'medication'?

kind regards,

Bit of a long story. First diagnosed in 2002 when I was 23 now I'm 34. It came back in 2007 and again July o this year.

I have only been on this medication in 2007 and again now. The fact that I have had a five year gap should work in my favour.

I wish you all the best.

My partner's uncle used medical marijuana to help with the pain and loss of appetite associated with chemotherapy.


All the best,

QV.

May i ask what your dosage is? Two a day so I would guess 100's?
Temodar is a powerful chemo, it specifically targets tumors. I'm not sure I might have missed it, did you already mention if you have had radiation yet?

They've been having great success with steriotactic high intensity focused 'gamma knife' type of radiation treatments. If this all started in '02 for you I would imagine you've already dealt with it.

Here's a tip: Take your chemo in the morning a few hours before you get up (empty) stomach, along with your Zofram (I'm guessing that's what your taking to manage nausea?). Go back to sleep then when you get up you can have a light breakfast. I would recommend a nutrition drink, something like what we have here called "Ensure". Mix it with a cold frappacino is good. I cannot stress the importance of keeping your immune system and blood cell count up.

Because you're back on chemo, I take it there is no possibility of a Resection? May I ask what part of your brain the Glioblastoma originated? Where you able to determine that from a pathology as result of biopsy? If so was it classified as a grade 3 Oligodentroglioma at that time?

As you know, soon everything will taste like tree bark, and bathroom troubles from hell can ruin you. Drink
a sodium Nitrate drink a couple times a week, and water all day long. If you get too dehydrated, you will be punished dearly for days if you follow me.

See if you can get pill form cannibus, called Marinol, it should help with sleep and appetite.
Let me know if you need any more info, I had to deal with a Glio in my family for years as a care taker.

Originally posted by woodwardjnr
reply to post by Night Star

 

Thanks Night Star. I am so pleased you kicked your cancers but. your chemo sounds much harsher than what I am going through. I'm lucky that the side effects are relatively mild. Just like a terrible hangover for five days. The lethargy is the worst thing.

I'm also lucky to have a team of great careers, mum dad brother and friends make sure I don't have to do anything.
All my chemo is taken in pill form from home, so no intravenous in ejections or anything as invasive.

The worst thing is occasionally the capsules repeat on you and you get a brief taste of the chemo.

I am happy to hear that your chemo isn't as harsh. Yes the lethargy is horrible. I was always curled up somewhere with a good book. I'd read for a while because I was too weak and tired to do much else then wham fast asleep. LOL

Once I fell asleep at my Mom's house (the apartment below mine) and she said, "Honey why don't you go upstairs and go to bed?" I said, "I would, but I'm too tired."

Also happy that you have people by your side to help you.

Just take one day at a time. You have a great attitude and that helps tremendously.

I'd just like to echo a few of the other posters and wish you well with your fight against this awful disease.
I have quite a few family and friends who are being treated for cancer.

I also agree with a few of the posters about using hemp oil ( the rick Simpson way) but we all choose what we want to be treated with.
As you've overcame it before, I'm sure you will again.
You sound a Very positive person, which I'm sure will help you on the road to recovery and with the help of your family and friends, will add more hope that you'll get there.

I'll add you in my prayers.

reply to post by Night Star


I try reading books, but , I struggle to concentrate, I'm lucky if I can make it through a movie. Although I watched the comedy Ted,Yesterday which had me laughing my socks off. Just what I needed.

Worst thing at the moment is lack of bowel movements, but I'm sure you don't want to hear about that.

reply to post by Lonewulph


You obviously know your stuff. To be honest I am following the instructions you laid out. It returned in July f this year and was deemed too close to the motor strip. They were concerned it would have damaged my functions too much to operate. In a way I was quite happy just to get going on the chemo. I have had brain surgery twice and it's a very stressful experience and with the added risk of losing major motor functions, I wasn't too bothered not to being going under the knife, although I would have, had the surgeons been confident enough.

I had surgery for the grade 3 oligodendroglioma in 2002 and again in 2007 when it returned as a gbm. I had radiotherapy back in 2002.
I'm wondering whether what I have s a grade 4 oligodendroglioma, even though biopsies have said its a gbm.

So after my 3 month scan this time I was told there had been a partial response. If this continues they have said they may continue the chemo for longer.

I wish you the best. Cancer is awful and seems to be more of it than I remember as a child. I'm 53 and use to be rare to hear of it. It seems to be almost an epidemic now.

reply to post by woodwardjnr


Wow, you've have been to hell and back a few times. They probably wont biopsy and will most likely just treat it as worst case scenario even if it is an Oligodendroglioma, they'll continue to treat it as GBM, I would imagine.
If it is showing some response to chemo you will be staying on that at least another year my friend.

Meanwhile, look into other treatment options should the response appear to diminish. I would imagine your Doctor discussed Avastin with you? Also keep looking into the latest clinical trials, much new news every week.

Finally, consider homeopathic routes which have proven success with many people as well.
Keep us posted! Surfing the web is about the only thing you'll have energy to do in a few months.

Remember, keep hydration up and cell count, don't go anemic!

That is my biggest fear, that the cancer will return. I can't imagine having to go through all that again.
You are an inspiration with your strength and courage.

Originally posted by Night Star
That is my biggest fear, that the cancer will return. I can't imagine having to go through all that again.

You are an inspiration with your strength and courage.

God forbid it does come back, but if it does I'm sure you will deal with it again. You don't want to waste your valuable time living with such fears, although I understand the inevitability of such thoughts. Every bump or lump I find I think is cancer.

reply to post by Lonewulph


Thanks for the advice again. The biopsy in 2007 came back as a gbm, but it is not behaving like a gbm. It is localised in the right partial lobe, well the right hand side of my brain.

I have looked into avastin, but it doesn't have great results from the evidence I've seen. Also being on a national health service, I think the drug is too expensive for the deemed effectiveness.

reply to post by woodwardjnr


Just taken my last lot of pills. I always have mixed feelings. It's good in a way I will be able to get some energy back and ready for Christmas, but in a way you feel like your not doing anything to fight the tumour.

It has been easier than the last cycle, for some reason. Maybe it's been the meditation. I've certainly felt a lot more relaxed and less bad tempered, which I'm sure my parents have appreciated as much as myself.

Thanks for the posts, advice and support. I appreciate that my experience may not reflect those with other cancers, whose treatments may come with much worse side effects.

Next cycle starts on the 2nd January , so I doubt I'll be doing much partying over nye.

Enjoy your Christmas and thanks for reading.

Have a wonderful Christmas!

reply to post by woodwardjnr


I wish you the best OP. I did the same with my blog, do you have yours on a blog? We could exchange. I don't have cancer but many other conditions. I find writing in the blog helps even if no one reads it. I can look back on it and keep track of what was happening in my life and what triggered some symptoms. Best of luck to you.