My Bro has tumour regrowth....3rd craniotomy 19 Feb '08

ksplat

Gidday to all,
Mark's MRI this week has returned with not such good news, although the tumour hasn't spread past the R frontal lobe, which is a bonus!
He will have his 3rd surgery on 19 Feb & the neurosurgeon will be placing the "gliadel wafers" in to the tumour bed during this surgery. Apparently, the cost of this treatment has been reduced from $30,000 to $13,000 & is now subsidised by the Aust Federal Govt...YIPPEEEE!
Mark is facing this with his usual strength & NEVER SAY DIE attitude & says "bring it on!"
His beautifu wife Kathy reckons Mark will still be having surgery when he's 99yrs old if she has her way! As I've mentioned before they have a great attitude & fantastic sense of humour (quite warped really as we Aussies are renowned for)!
I will keep you all up to date with any further news that I have.
I know all of you will be praying hard for Mark, my friends here on the forum are really my "rock" & "strength".
Thankyou & love to all,
Hooroo, Aussie Angie.
_________________
Brother has GBMIV
Diagnosed Feb 07
46 Yrs young!

"Without Faith We Have Nothing"

brainman

Oh Angie, I am so very sorry that Mark will need more surgery. It is good that they will be using the waffer this time... direct chemo vs systemic chemo is always best.

I really admire Mark and Kathy. I do not know what I will do "next time."

You know that Mark is always 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/

Mama 2 2

Hi Angie - I'm also very sorry to hear about the growth in your brother's tumour - though it's great to hear how positive you guys all are. It can be tough to stay that way sometimes, but it's amazing how much a positive attitude helps you cope.

Visualization is great too - I like to visualize walking hand in hand with my husband when we both have grey hair and him throwing our grandchildren in the air, just as he now throws our little girls in the air. We also have a message board on our fridge that I write little inspirational messages on, and for the last while we've had 'I am healthy, I am wealthy, I am loved, I am greatful' on there (of course wealthy means much more than finance to us . . . =).

I know some time ago you were looking into the Ruta 6 treatment - have you done any more research with that, or has he been taking it? We picked some up but my husband has a hard time taking it regularily (you're supposed to alternate it with the calcaria phosphorica - sp? - and it works out to taking one or the other every three hours. His work is so busy it's hard to remember) so he's been taking Melatonin nightly for the past bit instead as that you only need to take once at night before bed.

You and your family are in our thoughts - we love the Aussies and know the sense of humour well - my brother in law (husband's brother) is married to one (they live just outside of Sidney).

Take care!
~C~
_________________
~Life's too sweet to be bitter~

Our Story: http://www.cancerforums.net/about7982.html

ksplat

Hi "C"
Thankyou for your lovely words & thoughts.
I have been nudging Mark toward the Ruta 6 treatment for months now & although he seems keen to try it, I know he is delaying this avenue until the current Temodal stops working & then he will start trying alternatives. Although I know & have read Ruta 6 can be taken in conjunction with chemo, Mark is reluctant to introduce "alternative" treatments to his current regime as he is worried it may be detrimental to his overall condition.
How is your Husband's condition, has he noticed any difference since trying Ruta 6? Although I looked around on the forum I couldn't find your original story about your Husband? I know you have been very active in offering support & comfort to many on this forum, if you haven't already done it perhaps you could attach your own story to your other posts, when you have the time? In saying this, I am feeling a little guilty as I haven't bothered writing my bro's story at length, but there have been many updates about Mark, during his journey, alluding to his cancer, treatment & condition!
Thanks again for your support & interest.
Cheers, Angie.
_________________
Brother has GBMIV
Diagnosed Feb 07
46 Yrs young!

"Without Faith We Have Nothing"

ksplat · Posted: Mon Feb 11, 2008 6:16 pm Post subject: P.S!

Dear "C"

I loved your idea about the affirmations & messages kept on the fridge. This is another positive way of dealing with the emotional demands of this wretched disease!

Cheers, Angie.
_________________
Brother has GBMIV
Diagnosed Feb 07
46 Yrs young!

"Without Faith We Have Nothing"

Mama 2 2

Hey Angie!

We did do the Ruta for one or two months, but he would avoid taking it for the 5 days he was taking the chemo meds - the pharmicist and homeopath we spoke to both suggested this. Since it was only the first MRI he had since starting the chemo, we don't know what it was that was working - but his tumour shrunk so we were thrilled! He has been having a hard time keeping up with the Ruta these days though - he just started a new position at work which has been taking up so much extra time and added some stress, so the routine of taking it with the CalcPhos alternating every few hours was too tough to keep up with.

He is now taking melatonin each night which is another alternative treatment which is supposed to help. He's getting really burnt out with work and I'm a little worried that he's not letting his body get the rest it needs to help him keep this thing at bay - but hopefully the melatonin will help with that.

Here's the link to our story: http://www.cancerforums.net/about7982.html
I love reading all your messages of support to others as well - I think when there is so little we can control it's nice to be able to come here and vent/listen/share/empathize/etc. - and offer the odd suggestion too!

BTW, ~C~ is for Chelsea . . . it's a force of habit that I sign all my emails like that!

Happy Valentines Day!
_________________
~Life's too sweet to be bitter~

Our Story: http://www.cancerforums.net/about7982.html

jenugl

Hi Angie, Hope everything went well for Mark today. Thinking of you all. Love Jen.

brainman

Angie, I will be thinking about and praying for Mark as he has his surgery today. Or I guess that is "had" his surgery earlier today Embarassed

. How did it go?
_________________
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/

Tammy

Hi Angie,
As I type on this day, I am sure you are at your brothers side, I close my eyes and say a prayer....That when this day is done, may you have the courage to see the guiding hand you gave to your brother, with all the hurts that have been healed, and in the strength that you have given to him, to come out from this stronger and better than ever!

I never had any siblings so I don't know what I could say to give a shine of hope and strength to you both. You seem like a "one of a kind sister" to be doing what you are for him. Good Luck, Take care and Bless you both *hugs*
Tam~

ksplat · Posted: Thu Feb 21, 2008 5:29 pm Post subject: Update on my Bro

Hello to all my lovely friends here,
Thankyou, thankyou for your continued love & support. Such beautiful expressions of love & comfort from you all, it makes me feel truly blessed to have your heartfelt thoughts. Bless you all!
Mark has had another reMARKable recovery from 4th surgery (silly me I thought it was No. 3, but my Mum was quick to point out it was surgery No. 4!!).
He was eating a 3 course meal for lunch the day after (less than 24hrs since surgery). We were all very relieved & impressed with his recovery. There have been no obvious deficits from this surgery & they had him sitting up in a chair yesterday when I dropped in to visit before returning home to Brisbane. The nurses have labelled him TOUGH, to us his family he is our HERO & our INSPIRATION!!
The surgeon said he found the centre of the tumour had calcification & the tissue that he debulked from the centre of the tumour was like leather. Dr said he hadn't seen a tumour like it before. We don't know what this implies?
Two wafers (gliadel/chemo) were placed in the tumour bed.
Apparently, yesterday arvo Mark came "crashing back to earth" & was upset & feeling very low. I remember on previous surgeries he has had the same reaction on the 2nd or 3rd day after. God bless him if he can't have a bad day after all he's been through!! The staff left him sitting up in a chair for over 4 hrs yesterday morning & this no doubt wore him down. He asked the staff (while I was with him) if he could be moved back to bed & they asked him to hang in a little longer to have his lunch sitting up. Poor love this really "took it out of him" & contributed to his upset in the afternoon.
Once again thankyou one & all for your love & support. I'm off to catch up on housework now....YUK!
Cheers, Angie.
_________________
Brother has GBMIV
Diagnosed Feb 07
46 Yrs young!

"Without Faith We Have Nothing"

Aimster · Regular Joined: 03 Jan 2008 Posts: 32 Location: Nebraska

I am so happy to hear that Mark's surgery went well and he's recovering rapidly!
_________________
Amy (39)
*presumptive low-grade glioma in right frontal lobe (first observed Aug. 2007; diagnosed Jan. 2008)
*watching & waiting, but anticipating resection in the next year or so

brainman

Angie, I am so very happy that Mark did so well Smile

. He really is an inspiration to all of us.
_________________
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: Wed Feb 27, 2008 6:06 pm Post subject: Update on Mark

Hello again!
Mark has had a slight setback with his recovery & is currently doing intensive physio to regain some strength & confidence since his surgery last week. On day 2 after surgery he started experiencing "focal seizures" which were felt in his hand & arm. His Dr wasn't overly concerned as he believed this was due to the "gliadel chemo wafers" that he placed in the tumour bed. He told Mark that other patients had experienced the same kind of seizures, like twitches. Mark said it felt like his hand & arm were floating! It was also discovered that his dilantin levels were low, they pumped him with dilantin during surgery & the levels had dropped 2 days after, so they adjusted the dilantin. Then he realised he didn't have the confidence nor strength to transfer from his bed to wheelchair, etc. Hence the intensive physio/rehab he is doing each day. Dr told him yesterday he can go home when he's ready, but Mark has chosen to stay for another week in order to build up his strength & confidence with daily rehab.
Poor darling was also feeling quite down that none of his "mates" had been in contact after surgery, but I believe when the weekend came they made up for their mistakes.
I spoke to him Tues, he was very depressed & calling himself "useless" & "hopeless", I was very concerned for him & most upset. I've since made contact with the "social worker" at the hospital & explained Mark's past history (of which she had no idea, don't they have access to patient files!!!!!), & I told her of my concerns about Mark & Kath needing some conselling! She assured me she would follow up & make contact.
Mum rang me to tell me that Mark had been praying to God about his tumour, laying in bed yesterday morning & God said to him "Mark, you can have this one for free!!!" Mark then "moved his bowels" after more than a week. He was in good spirits when Mum phoned as he relayed this story to her & said, "Praise God" & "Halleluah"! I said "Thank God & PTL (Praise the Lord)" his sense of humour is back!
I phoned him today & said I'd heard God gave him the SH--- yesterday! He laughed!
I hate what effects (emotionally, spiritually & physically) this illness has had & continues to have on my beautiful brother, his wife, family & all of us!
Sorry for the negativity, but have had a pretty ordinary week!
Cheers, Angie.
_________________
Brother has GBMIV
Diagnosed Feb 07
46 Yrs young!

"Without Faith We Have Nothing"

Mama 2 2

Hi Angie,

So sorry to hear of Marks troubles. I sure hope his rehab goes well and he can get home soon. I hadn't heard of chemo wafers before - are they pretty effective? I sure hope that it works well for him.

I can't even begin to imagine what he and his wife are going through - as well as his other loved ones like yourself. What Elias has gone through - while challenging in its own right - seems so mild in comparison and I think it really helps give us strength.

Keep up the positive thoughts, and ours are with you!

~C~
_________________
~Life's too sweet to be bitter~

Our Story: http://www.cancerforums.net/about7982.html

jenugl

Hi Angie, I was so happy to read that Mark's op went well, but then so sad to hear of his troubles afterwards. Hope, faith and a sense of humour are wonderful things and have kept Andrew and myself going.. I hope and pray that God sends Mark some more freebies Smile

You are all in my thoughts. Love Jen.
_________________
Love to all. Jen.
_____________________________

Partner of GBMIV survivor - so far.

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