I Just Need To Know What We're Facing.....

Hi everyone,

My husband, Steve, 44 years old, was diagnosed (after removing a tumor) with GBM 4 on April 13, 2006. Since then, he underwent chemo and radiation for 7 weeks, and then developed pneumocystis pneumonia. He is currently receiving bactrim daily to battle the pneumonia.

He had his 5 day course of temador July 13-18. He still has seizures, sometimes daily. We went to his regular MD on Saturday for a frequent urination problem, and now we're told he has an enlarged prostate.

He is very weak and continues to be extremely sleepy.

I guess my question is, does this get better? Not the disease itself, but the daily feelings? We thought that he would have a break or feel a little better in between treatments, and so far, cannot get a break. Is this what will be the routine from now on?

Also, I'm extremely worried that the radiation did more harm than good. My husband is an attorney, and he is extremely intelligent, and now he has a hard time reading one paragraph. He cannot understand the words.

I'm very scared as I don't know what to expect with this disease. It seems as though the rules are always changing.

Please, someone reply to me. I have no one to talk to.

Thank you.

Peace & love,

Alison

Dear Alison, I am sorry to hear about your husband's symptoms. My father's surgery (also GBM 4) was 6 days ago and he just started the urination issues. He feels like he has to go all the time, but tries for hours to only get a little relief. They put the catheter back in yesterday. He also has blood seepage forming a clot in the tumor bed, which they're thinking they may have to do surgery again to remove.

Seizures didn't begin until today. None before surgery. He's having a horrible time sleeping. He has been up for days.

I'm sorry I don't have any answers for you on the side effects of treatment. If we can ever get my father out of the hospital and recovered from surgery, we'll start ours. I would love to talk to you via email but I don't think you can post addresses on here. Maybe if I type it

--- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ----.............see if this works.......any support helps I think....

Hi Alison,

My dad with diagnosed on June 15, 2006 and he decided not to have surgery. He is 66 years old and we have just passed the halfway point of radiation and chemo treatments. Other than seizures he had no other symptoms until recently. Now we are dealing with loss of hair, sleepless nights, trouble with numbers, difficulty finding the correct words, and comprehension issues. He cannot read much of the paper because he has trouble putting the words together. From the research that I have done and talking to the doctors, I do not think that the daily issues will get any better (not what you want to hear). I have been trying to find information for my mom because she just wants to know what to expect and that is the hardest part. She has admitted that she sees a little more detioration each day and that is what the doctors told us to expect. His tumor is on the left temporal lobe so we are expecting right side weakness, vision issues, and speech issues. Thankfully he has not had pneumonia yet but they did put him on antibiotics to help boost his immune system during the chemo therapy. I will keep you and your family in my prayers as we are all dealing with this horrible illness.

Alison,

I was diagnosed with a glioblastoma in Oct. 2003. I also went through the radiation treatments with Temodar.

The fatigue did get better little by little. I would get a little more tired during the last 2 days of my 5 days taking Temodar eadch month. But then I would have 3 good weeks where I was able to be more active.

God Bless

Alison, sorry you had to join this board. One question - was your husband on antibiotics during radiation? If not, we can discuss that offline. My 31 y/o wife was diagnosed with GBM June 1, 2005. 3 surgeries, an IL13 clinical trial, radiation, Temodar, CCNU, CPT-11, Avastin, and Gleevac later she is back at work, training for a triathlon, and chasing our toddler around. We expect to start her on Tamoxifen in another 2 months after we finish the last rounds of Temodar/Gleevac. It has been a long, tough road full of ups and downs, but we have had far more good days than bad. It is difficult adjusting to the new definition of what is 'normal'. My wife runs her own business and I believe that has helped her significantly on the cognitive side getting back into the swing of things. Also, she exercised when her body allowed her which I also believe has helped her weather her chemo tratements. We have also gotten her on a supplement plan developed with Jean Wallace of nutritional solutions. She specializes in developing nutrition plans for brain tumor patients. I can't say for sure that it has worked, but my wife passed her original 'expiration date' 2 months ago and is cancer-free and doing well. I would strongly recommend you solicit a second opinion on your husband's treatment from one of the major Brain Tumor centers such as Duke, MD Anderson or UCSF. Most general oncologists and even major cancer centers have little experience treating brain tumors and you do NOT want your husband to be the one they make their mistakes on.
There is no way to sugarcoat the fact that this will be a long, tough battle fraught with fear and peril. However, it is a battle that is being won more and more often. You MUST be your own advocate with the doctors and don't be afraid to 'fire' one if they are not up to the task. You only have one shot to get it right., Do your research, be relentless, and join the brain tumor email listserve provided by the Musella Foundation and MIT. Good luck!

You can go to braintumor.org and post all the email sites you want.

Susie....we have a few questions if you don't mind. Larry starts his chemo and radiation tomorrow morning. He is taking 140 mg Temador daily with radiation along with Zofran for nausea, also an antibiotic. He is exercising (swimming and walking); he is taking Boast Hi protein daily along with a very nutritional diet. Is this the amount of Temador you would normally take? He did have surgery with the tumor removed (?); but we know how aggressive this type of cancer can be. He is very positive, but has his moments of doubts. Reading these message board replys to him and his wife give them much needed reassurance. Thank you all. God bless. Larry is 42 years old. Jan

Jan, i saw your note about larry starting his chemo and radiation. At least it's nice to actually get things started, isn't it? It beats waiting and dreading!! As for temodar, i believe my doc started me on a slightly higher dose (maybe 50-100 mg???), but i couldn't tell you for sure what it was because it has changed. I believe i already mentioned that the doc also gave me kytril for nausea, and it worked great -- no nausea at all as long as i take the kytril an hour before the temodar, then go to bed. Temodar has done a great job for me so far (it's been over a year now), and of course i'm praying that my latest mri taken on friday will be clear like the others have been. I'm sure those researchers will find a gbm cure any day ow,so tell larry to keep the faith and enjoy every moment of every day!

By the way, i still take temodar 5 days out of 23, and the dosage is is usually 100 mg per night for 3 of the nights and 200 mg per night for the other 2 nights. If my platelet count goes too low, the doc decreases the dose for a while.

Let me know if there's anything i can help you with, and give larry my best wishes. I'm praying for you all!

Hi Susie: Thank you so much for answering! Yes, it is nice to get started......I gave Larry the instructions you gave about taking Ativan before his radiation; that helps so much from one who has been through this. Right now we are praying no ill side affects. He is still very nervous, but I have to tell you that you messages have helped tremendously. God bless you and we will also be praying for you. He truly believes he will beat this horrible disease!! That is so important. Thanks again, Susie and take care. Love, Jan

Dear Susie: Please let us know about your MRI; praying that you will have great results! God bless you. Love, Jan