Newbie

Zippy · New User Joined: 31 Jul 2007 Posts: 5

Hello. I am new to this site and was hoping someone might be able to help.
I have an Anaplastic Astrocytoma, and have been receiving chemo since March.
I have been told that despite the treatment the tumour is continuing to grow. The Drs want me to have more chemo, but I am not sure what to do. This year has been hell so far, and if chemo is having no effect, is there any point of making myself unhappy when I should be enjoying any time I might have left.
I know the prognosis is not the best, and I really don't know what to do for the best.

Any help/help would be greatly appreciated

brainman · Posted: Tue Jul 31, 2007 12:53 pm Post subject: Re: Newbie

Hi Zippy,

In 1992, I was diagnosed with an Astrocytoma Grade II... I believe your tumor would be a grade I. I received Chemotherapy also. In my case, CCNU. You did not mention what chemotherapy you received. I took it for 13 months and it almost killed me! While I was able to continue to work most of the time, I was hospitalized twice. Finally, they ended treatment early because my white blood cell count dropped very low and I got pneumonia and had to be hospitalized. That was almost 15 years ago!!!

I know so very little about your situation and nothing about your chemotherapy. I started to respond almost immediately where as you have been taking it for 2 months with little or no impact on tumor growth. I would recommend that you talk with your medical team to access what chemo you should be taking. You might even want to get a second opinion at a major medical center or university research hospital.

While an astrocytoma is serious, it should NOT be a death sentence.

I will keep you in me thoughts and my prayers.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

Zippy · New User Joined: 31 Jul 2007 Posts: 5

Hi Brainman. Anaplastic astrocytoma is grade 3. I am in the UK, but I presume all grading systems are the same.

I have been on PCV, with disappointing results.
I have been hospitalised a couple of times through low bloods etc, but on the whole I have avoided being admitted.

I just wish someone could give me all the answers and tell me that all is going to be ok.

brainman · Posted: Wed Aug 01, 2007 4:34 am Post subject: Re: Newbie

Hi Zippy, I hate to be so blunt, but... unless the treatment is working, the cancer will continue to grow out of control until it is too late. Your best option is always to surgically remove the cancer. However, if that is not possible, a chemotherapy regiment that can cross the brain/blood barrier is required. I took PCV for a while until the "V" part (Vincristine) started to cause neuropathy so, basically, I ended the treatment with CCNU. PCV was the "gold started" treatment for gliomas. However, Temodar is rapidly replacing it. I have heard the Temodar is hard to obtain in the UK medical system. I do not know if that has changed. But it does not sound like PCV has slowed down the growth of the cancer so Temodar is an option you should discuss with your medical team.

Good luck and I will continue to be praying for your long-term recovery.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

Zippy · New User Joined: 31 Jul 2007 Posts: 5

Hi Brainman, and thanks for replying.
Temodar is hard to obtain in the UK, and because I have not had a good response to treatment before, my health trust will not fund me at the moment. I also have Myeloma, which complicates matters, although at present, it is not active.

I cannot be treated surgically, tumour is invading 3 lobes, and is too deep.

CCNU has been mentioned but I do not know too much about it, if I were to agree to CCNU, is there a recommended regime to follow...and if PCV hasn't been working, then is CCNU likely to work instead?
Sorry for the questions, I am avoiding my Dr at the moment, and I don't know what to do.

brainman · Posted: Wed Aug 01, 2007 6:35 pm Post subject: Re: Newbie

Zippy, I am sorry for not being clearer in my previous reply: CCNU is on of the three component of a PCV treatment (the "C" part). If you have been treated with PCV, you have had CCNU already.

I am sorry that you do not qualify for Temodar. I had heard that it was next to impossible to obtain in the UK. I just hoped that things had changed.

I continue to keep you in my thoughts and prayers.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

ksplat · Posted: Thu Aug 02, 2007 1:22 am Post subject: newbie!

Dear Zippy, I am impelled to write, firstly to offer support and tell you I will keep you in my prayers and pray you will be able to access Temodar as a priority for your treatment. I live in Australia and I can't believe the UK is behind Aust in supplying cancer drugs. My brother has GBM IV & has been given Temodar since his initial diagnosis in Feb this year. There appears to be no barriers in Aust to access this particular drug. Are you able to speak out to Drs, nurses, administration, media, local council, govt. about this injustice. I can imagine you would not be up to this kind of pressure with what you're dealing with....but how about family, friends, church. If I believed my brother was being treated unfairly with his drug regime I would be brainstorming & rampaging & probably picketing our state parliament for acceptable access to the latest treatments for brain tumours/cancers. As it is I have written/emailed & been very proactive in regard to my brother & I am blessed I am able to support him in this way. You must open up to others about your illness you will find that people who are close to you will be only too happy to help out in any way they can. My brother has an inoperable GBM (on his brain stem) and has been treated with Temodar, Radiation, Steroids (for the seizures), he has had the tumour debulked and has also used "Lourdes Holy Water" and a plant extract (juice) from the Aust indigenous culture to cure his cancer. His last MRI in June was miraculously clear. MY brother had a follow up MRI this week & is still waiting to speak to his neurosurgeon to get the result. Please try and stay positive Zippy. Thinking of you, Aussie Angie.
_________________
Brother has GBMIV
Diagnosed Feb 07
46 Yrs young!
http://cancerforums.net/viewtopic.php?p=19227

"Without Faith We Have Nothing"

Zippy · New User Joined: 31 Jul 2007 Posts: 5

Jim, it's not you, my understanding is not what it used to be!

Aussie Angie, the UK is way behind, we have to fight all the way for some drugs. The name escapes me at the moment, but there is a drug for myeloma, I think it is temodal, that people can get, but the NHS won't fund it, but there is a new ruling that if they do agree to give it to patients that qualify and it fails to work, then the drug company ill reimburse the NHS. Of course, I don't qualify! There is so much red tape over here, and qualifying measures etc.

It is amazing to hear about your brother. I to have been blessed with Lourdes water, and have been to a healing mass, but as yet, has yet to have an effect, still haven't given up hope though. Am fascinated about this "juice"...is it only available in Austraialia?

Does anyone know of any other treatments available that might be of any help? I don't want to rely on the Dr suggesting chemo treatments to me, if I can go armed to the hosp with my own suggestions, show them that I am doing my own research, it might help me feel a bit more in control and not waiting for them to do something.

ksplat · Posted: Fri Aug 03, 2007 7:15 am Post subject: NEWBIE

Dear Zippy, I knew I had read this but didn't remember how recently? Anyway I found the post & have copied & pasted here for you to read:

[b][i]It was on the news yesterday that temodar will now be available in the uk as a 1st line treatment.

I tried to get this for my husband last year but I was unable to . Thankfully he has done ok on pcv chemo untill now. His tumour is now growing again so they are going to try temodar as a second line treatment. The hospital seemed surprised that he had tolerated 9 cycles of pcv. Hopefully the temodar will keep the tumour from growing as quickly.

I'm glad that at last new patients can get the treatment that those in other places in the world have been getting and they don't have to fight for what they feel is the best treatment. [/i][/b]

This story was posted by ALOCIN on Fri Nov 3, 2006. Unfortunately, I have just read in the past week that ALOCIN's Husband has passed away...so sad. I thought u would be interested in the content.
My bro's juice is very exclusive & only available from a particular plant in Western Australia. My bro found out about it from an old school mate who contacted him (hadn't heard from him in over 20yrs) when he heard about the brain cancer. My bro ordered several bottles of it & had them flown over from Perth, WA. He's been drinking a cup or two every day since his debulking surgery. My bro doesn't even know what it's called or what plant it's extracted from. I will probe further for u & maybe I can phone this "mate" in Perth to get more info. I will keep u posted. I will be thinking of u Monday when u have yr next meeting with Drs. God Bless, Aussie Angie.
_________________
Brother has GBMIV
Diagnosed Feb 07
46 Yrs young!
http://cancerforums.net/viewtopic.php?p=19227

"Without Faith We Have Nothing"

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