Newly Diagnosed

[OhBob]

Howdy,

My name is Bob, I'm 53 years old and just recently diagnosed with a grade 4 GBM. I will be starting my Radiation therapy next week for the next 6 weeks and the Chemo using Temodar. I had surgery on 3/12 to remove 2cm tumor from the visual area of the brain(right side upper back area of the brain). Any insights or suggestions anyone has as I make this trek would be greatly appreciated, also any books or advice on how I can make this easier on my family(especially my wife).

Thanks in advance and God Bless,
Bob

[brainman]

Bob, I am so sorry about your cancer. Unfortunately, a GBMIV is very aggressive. My mother had one in 1998. She died within 2 months of her diagnosis but she opted for no treatment.

While the prognosis is not good, as I tell everyone, a prognosis is just a statistical estimate. I like to know my prognosis but only in order set my goals for whatever time I still have left. After that, I try to set aside the prognosis and live one day at a time working toward those goals. The questions you need to ask yourself are questions like:

1. What do I still want to do?
2. Who would I like to see/talk with? (High School friends you haven't contacted in a long time...)
3. Where would you still like to go, places you would like to see?

etc.

One of the most important this for you to do, and that in the long run will help your wife a lot, is make sure that your Will, Living Will, and other legal documents are in order. If possible, you could also pre-plan and per-pay your funeral.

I hate to be so bleak. I have no way to know how long you still have. Any one of us could die before you so this suggestion applies to everyone. Making sure everything is in order is NOT a sign that you are giving up; it is just a sign that you are a loving and responsible man and husband.

You and your wife need to also make sure that you have a strong local and family support group around you. This forum can help you a lot however there is nothing like a hug from a real person .

You and your family are in my thoughts and prayers.

[chatterboxgayle]

Hi Bob,

My name is Gayle and I share your diagnosis of GBM IV, also 2 cm - had surgery in March/08 so it's been a year now. Ive had all the standard treatments, i.e. chemo and radiation concurrently, then 6 months of chemo - have had a couple of MRI's and they've both been clean so far. It's such a disheartening feeling to be going through - our prognosis is pretty dismal and yet at least for me, I feel mostly entirely well. I think that's what makes it even more difficult - I don't even feel like I've got cancer. I haven't worked since the surgery as I was a bookkeeper and just could not reason properly anymore. I also have concentration problems. After I got my emotions together (being on anti-depressants was a must for me - it allowed me to go on living every day) I am now trying to have as normal a life as is possible, i.e. doing the things I enjoy doing every day. I'm always waiting for the ball to drop though and even though I am feeling well now, I know that I won't be sometime down the road. I always manage to put those thoughts away though. As Jim suggested, I have put my affairs and wishes in order so my family won't have to deal with those things later on.

Please keep in touch with us at the forum - happy Easter to you!

Hugs,
Gayle

[OhBob]

I hear ya, my faith in God is strong and no matter how much time I may have I will cherish it and insure those around me know how much they mean to me. I'm receiving excellent support from my doctors and they all feel I have a good chance of being around for a bit longer than just the minimum stats, we can only pray an like you said one day at a time. The most recent MRI after my surgery was clear, we'll just need to see what it shows after I've had my first 6 weeks of rad and chemo. Thank you for responding, God Bless you and I will be saying a prayer for you and everyone else on this forums.

Bob

[OhBob]

Gayle,

Thank you, my wife's is Gayle also, yet she goes by Gaye, you gotta hug coming right back at ya. One of the most difficult things to deal with so far is the not being able to go back to work, my Manager has been outstanding, the folks in HR have been so supportive. I'm excited to finally get the therapy sessions started, anxious to see how my cancer will respond to the treatments, especially seeing it'll be june/july time frame before they do another MRI to see. It all rests in God's and I trust what ever his plan is for me is what is best.


Bob

[brainman]

Bob, I am very happy that your employer is so supportive. Mine was too. I only had to be off work for a few weeks. Chemotherapy made me miss a few days every 6 weeks but not too many. My employer let me make up missed time too... that really helped.

However, in 2005 when my cancer recurred, the doctor classified me as "disabled" so I had to give up my job. I do have some residual problems with speech, right sided weakness, and balance problems.

[OhBob]

little update, I've finally started by chemo/radiation treatments, all seem to be progressing well, no bad side effects yet, I've got 5 more weeks of radiation to go. Question, once the radiation is done do they not ever treat you with radiation again only chemo?

[brainman]

Bob, glad to hear that your treatments are going well.

To answer your question (what about future use of radiation?), it depends. If you are receiving the maximum radiation at this time, then you cannot receive more in the future. It is a life time limit. More will just increase the danger of the radiation causing cancer and other health problems.

Although you only have 5 weeks more of radiation, the radiation has a residual effect; it will keep working even after your last treatment... 4-6 weeks longer.

As always, you are in my thoughts and prayers.

[OhBob]

Thanks Jim, didn't know that

[Pasavat]

Dear Bob,

My sister Mary passed away in August 2008. She was diagnosed with GBM IV in June 2006. I just want to share a few things that helped our family through this journey. Early on in her illness, Mary wrote letters to her loved ones that were handed out following her death. A friend suggested having Mary sign birthday and Christmas cards, as well as cards to be used for future events that she would miss, such as weddings and births, stating how sorry she was that she would not be able to personally witness these events but that her spirit and her love would be present. Together Mary and our other siblings compiled a journal of what our life had been like growing up. This journal is a treasure chest of memories and chuckles. A year in to her illness, Mary allowed me to make a videotape of her in which she relayed her life story, how she wished to be remembered, and how much she loved every person in her life. We made multiple copies of this film and have all watched it many, many times. It is a great source of comfort to us. I love still being able to see her smile and hear her laugh!

Books that I personally found beneficial were "Chasing Daylight," by Eugene O'Kelly (a chronicle of the 3 months he lived following diagnosis of a brain tumor) and "Still Alice" by Lisa Genova. The latter book is a fictitious account of a 50-ish woman who develops Alzheimer's Disease. I found it immensely helpful as often the characteristics of Alzheimer's and brain tumors are similar.

I have a friend with GBM IV who was diagnosed three years ago and whose MRIs are still clear. Never give up hope!

Attitude is so important --- and it sounds as though you have a good one! I wish you well, my friend. Surround yourself with the people and things that give you pleasure, and continue to make happy memories!

Blessings ~
Pam

[OhBob]

a little update on my travels with this thing. I finished up my rad/che sessions this week and I'm now waiting until I have my MRI in 4 weeks. I'm so sweating bullets right now. I so want a clear MRI. The worst side effects I got from the rad sessions was hair loss and extremely tired, but I'm told both should return to normal in about 2-3 weeks the hair a little longer. I'll let y'all know the outcome of the MRI as soon as I can.

Bob

[brainman]

Bob, I am glad to hear from you and that you have finished the radiation. That one month wait is very taxing... I remember but time will fly by.

Keep us informed.

[lbarnette']

Hi Bob:

I am happy things are going well for you so far. Awaken every morning and say "thank you for my healing" Those words will release the natural endorphines in your body to begin the healing process. My thoughts and prayers are with you. I am praying for negative mri results for you

[OhBob]

Howdy all, well I just had my first MRI and sit down with my Oncologist after completing the Chemo/Radiation treatments. All in all came out of the meeting feeling very optimistic. There were no signs of any new tumors anywhere, the area that they had removed the tumor still shows some bruising and swelling, but overall the Dr was very optimistic. They are going to start me on a higher dosage of the Temodar for 5 days, then in a month do another MRI, God willing this area should be recovered and they will have a better picture on how the cancer has or has nor progressed.

God bless you all, my prayers go out o you all

Bob

[kenobewan]

Hi Bob,

That's great news! There may some necrosis further down the track, but glad you came out well .

I did have Temodar and the 5 day regimen at the start. Then I found out about metronomic regimens, smaller doses for 20 days, and now favour this approach. I am going back onto chemo, different drugs, next month and I am going to request it metronomically again. The smaller does for longer have been shown to be more effective with less side effects.

All the best with your next round of treatment .