help!!!!!!!!!!

momaton · Regular Joined: 18 Mar 2008 Posts: 14 Location: central fl

My husband spent the last 2 days in the hospital...MD Anderson here in Orlando. I had to call the paramedics to take him because he was having severe headaches and nausea and throwing up.

Rob was dx in late Feb of this year with a GBM. 80% resection (temporal/parietal) standard radiation/temodar and just completed his first round of 5/23 temodar.

Well, the Ct and Mri scans show many new tumors in his ocipital lobe and temporal lobe. All enhancing. Both ventricles on the left side are compromised with tumor and the cerebellum is also compressed with tumor.

Lovely!

The neuro-onc that saw Rob...NOT Rob's neuro-onc....this new guy is helping Rob's doc while he is transfering to Md Anderson...
wants to start Rob on Avastin and CPT-11 on Monday!.

I am sure he consulted with Rob's doc.
. Anyhow, Rob can have Avastin only once a month because he had colon cancer last year...too much risk of bleeding if he is given any more.

As you know this is a treatment for colon cancer..Rob refused it last year when he had chemo for colon cancer.

He said with the CPT-11 and Avastin Rob could "possibly have 1 year" without anymore treatment...2 to 6 weeks.

I guess what i want to know is....
how have you done on this treatment? and is once a month of Avastin even worth the risks?

Thanks all,

Eve
_________________
"Human beings are always trying to fix things. Our hardest lesson is seeing perfection in the imperfect world."

from a little Zen book that I own.

brainman · Posted: Thu Jun 19, 2008 11:25 am Post subject: Re: help!!!!!!!!!!

Oh momaton, I am very sorry to hear the your husband's GBM has returned. So I guess the area of enhancement you asked about previously was cancer after all Sad

.

If I knew it, I forgot it, but your husband has had two primary cancers with in a year? You know how rare that is? I am not sure about the statistical numbers, but the odds the same person having two primary cancers is very low. I am so sorry your husband fell into that small group of unfortunate people. So you have had to deal with cancer for a very long time!

As always, my thoughts and prayers are with you and your husband.
_________________
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/

traceysharon · Posted: Sat Jun 21, 2008 9:10 am Post subject: Re: help!!!!!!!!!!

Hi Eve

We have recently had experience with Avastin, and it worked wonderfully in reducing severe swelling quite quickly.

My husband has a Grade III Oligoastrocytoma - 80% removed in July 07. He stayed on Temodar for 5 months, but the tumour then regrew. We then switched to Carboplatin (IV once per month) together with Etoposide (tablet form - 1 taken each day for 11 days following the IV of Carboplatin).

Anyway, while on this drug regime he too was rushed to hospital for severe swelling and initially they thought he would not survive. Dexamethasone was increased which gave marginal improvement and then they tried the AVastin. It worked really quickly to reduce the swelling. We were told it only works in about 57% of cases, and my husband had no new tumours like you are experiencing.

Hope this info helps.
_________________
Tracey, Wife of Patrick
Diagnosed July 2007 with Oligoastrocytoma Grade III
Resection 18 July 2007
30/33 radiotherapy treatments
5 months of Temodal (5/23)
Started Carboplatin/Etoposide March 2008 - continued for 3 cycles
1 IV of Avastin on 15 May 2008
2nd debulking 26 June 2008

momaton · Regular Joined: 18 Mar 2008 Posts: 14 Location: central fl

Thanks all for the replies.

After talking with Rob's neuro-oncologist on the phone...we are really upset.
He says to stay on the temodar. That he thought the MRI didn't look so bad. We then got a call from the other-neuro oncologist wanting to set up the appointment for the Avastin-cpt-11..

I begged the nurse to fax me the MRI report...the tumor(multi-focal) is bigger than before surgery in February.

I can't tell you how angry I am at the differing opinions..from two docs that work together.

So, Rob and I talked for a good long while. he has decided to stop all chemo. Take the steroids, for swelling and we will have hospice come over on Monday. I talked to them when Rob was in the hospital...this will make it official.

I can now call the red cross and have them arrange to have my Marine son come home from duty in Iraq.
My other son is in the Navy. While he is only 2 hours away..he too will get long term leave.
The boys are Rob's step-sons...Rob has been a wonderful dad to them. We are really looking forward to being a family again, under one roof.

Rob's decision has actually brought a sense of peace and normalness to us.
We can laugh again! It's as if we know where we are going now on this journey and are off the roller coaster and on solid ground.

love and hugs to all,
Eve
_________________
"Human beings are always trying to fix things. Our hardest lesson is seeing perfection in the imperfect world."

from a little Zen book that I own.

4lindsay · New User Joined: 12 Apr 2008 Posts: 7 Location: Seattle

Eve~So sorry about the situation but I'm glad you have a peace about the decision you all have made. I know it gets tiring fighting the battle...I helped my sister fight breast cancer for a year and we just lost her in Feb. I saw in a previous post a link to brain hospice and looked at it briefly. [link deleted by admin].

Know that there are a lot of people on here that are thinking about you and your family.

Take care,
Dianne

momaton · Regular Joined: 18 Mar 2008 Posts: 14 Location: central fl

a little update.....

Well, hospice came to our home on monday...

I feel as if we have truly stepped off the roller coaster.
I am so grateful for hospice being here.
The nurse took Rob's vitals and just finished off the paper work...made friends with our big ole dog and answered a ton of questions and LISTENED to our worries, concerens. She called Rob's neuro-onc and had them start to type up papers for social security disability and papers to send to the Red Cross and my marine son's commanders in iraq...to get him home as soon as his current mission is done...8 weeks(sigh) I could use my son home now...but i know he wants to stay with his men until the mission is done.

I have to make NO more trips to the pharmacy...all meds will be delivered to our home.

They have lots of volunteers that will come in and cut Rob's hair, give him a massage...lots and lots of stuff.

The whole experience was wonderful. I don't feel so alone. And Rob feels good about it too.

While Rob is doing aok right now..and doesnt really need any help...it is good to know ...at a seconds notice 24/7 i can have a nurse here helping us out....I know that is comming all to soon...

i have read a lot of stories where people thought they waited too long to call hospice...I am glad I didnt. They just want to make everything as easy and painfree and normal as possible.

So we have made a right turn on our journey. Now we live and breathe and enjoy the time that is left.

So now to today...wedensday.... I have already had 2 calls from Rob's nurse...just to inform me as to what is going on from Hospices' side of the process.
I am continually amazed at the care of Hospice. Way different from the doctors.

We have just recieved an overnight delivery of meds...

The counselor/social worker will be here in the morning (tomorrow).

The doctor will make a home visit on Monday. A home visit, wow!. Rob is completely capable of going to the doc...but they are coming to him. Amazing.

Hospice will even find a volunteer to walk and wash our big dog...lol
After Rob dies (sigh) they will stay with me for 13 months ...just to help me out.

If you even are thinking you may need hospice...call them...the peace of mind and care is a true gift form God.
Peace, Eve
_________________
"Human beings are always trying to fix things. Our hardest lesson is seeing perfection in the imperfect world."

from a little Zen book that I own.

simplyklb · Posted: Wed Jun 25, 2008 11:44 pm Post subject: Re: help!!!!!!!!!!

Hi Eve,
I am sorry to hear about Rob's condition. Sad

My thoughts and prayers are with you, Rob, and the rest of the family.

My dad is on palliative care. My dad has small cell lung cancer and it has spread to his liver and bones. He was diagnosed on May 6, 2008. My mom has non small cell lung cancer. I am their primary caregiver. I was soo thankful the day that the oncologist's office made the referral to palliative care for my dad. we had our intake on Father's Day and we have had two visits from Dad's nurse. She will be out Friday to make sure he is OK. I am sure she will be out on Monday. We've had the occupational therapist here. Tomorrow the social worker comes out to visit us. I also have a volunteer that comes in weekly. My dad is not too keen on that but it is a resource for me. My mom gets a benefit out of it.

Kristi
_________________
Dad - Andy, 70, diagnosed with SCLC in May 2008
2/20/38 - 10/15/08 Fly high, Dad!
Mom - Jackie, 67, diagnosed with NSCLC in May 2008

ksplat · Posted: Thu Jun 26, 2008 5:33 pm Post subject: Re: help!!!!!!!!!!

Dear Eve

I have been watching your journey closely & continue to keep you in my prayers & thoughts.

Your recent updates have been uplifting & inspiring, with you & Rob opting for Hospice & palliative care. I can't imagine how difficult this time has been for you, Rob & your family?

It seems now you have made this decision your lives are now being blessed with a Peace & Comfort free from alot of the struggles you have endured in this journey.

We are very grateful you are a part of this community sharing your journey here. You & Rob will be a catalyst & inspiration to many of us.

Thinking of you & God Bless,

Cheers, Angie.
_________________
Brother diagnosed with GBMIV Feb 07
Treatment: Radiotherapy, Temodal, Gliadel Wafers, Dexamethasone, Keppra, Dilantin, Clexane
Went to our Heavenly Father after a 19mth battle,, 47 years young.
23 Sep 2008
http://cancerforums.net/viewtopic.php?p=19227

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