Have 21 y/o daughter just diag wih GBM

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Have 21 y/o daughter just diag wih GBM

by momlooking4cure on Thu Oct 29, 2015 02:11 AM

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Are there other parents with a very young adult just getting this diagnosis?  My daughter had her GBM removed last month and is in her 2nd week of Temodar and radiation.  This diagnosis is devastating as a parent.  We are seeking a 2nd opinion to make sure we are doing all that we can.  We live in a rural area and there are no other patients anywhere close to her age.  We had to withdraw her suddenly from her senior year in college.  She very much wants to go back in January.  Are there others who have gone back to school this soon?  Her doctor today gave her a blow by telling her not to try to go back to college in January as she will be too tired from treatment.  Going back to school is the sense of "normal" she is holding on to. 

RE: Have 21 y/o daughter just diag wih GBM

by Dodgerblue on Thu Oct 29, 2015 12:14 PM

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     Once she is 2-3 weeks past end of radiation treatment, her energy should pick up quite a bit.  Given her youth she should be able to handle school and 5 days ON temador a month.  For myself, I would lose my appetite for about a week and get a litte run down.  However, with anti-nausea drugs used properly, that was the extent of it.

   It sounds like she had the tumor removed or debulked at least.  Given her age, tumor resection, it sounds like she hasn't lost functioning level.  These are all main factors in favor of her beating the statistics that you may have seen or heard of.  I know several GBM survivors that are approaching 10 years and there is woman on this site, who is over 20!  While such survivorship isn't the norm, there is hope that your daughter could be a long term survivor.  In the next 5-10 years brain cancer treatment could see some real progress, so don't give up hope.

I would consider getting a Neuro oncologist from the closet major cancer hospital.  Her current treatment is the standard treatment for all newbies.  However, if that stops working, she should have access to most promising clicical trials, which may be tough from rural local institution.

Any questions, don't be shy.  Best of luck,

Dodger 

RE: Have 21 y/o daughter just diag wih GBM

by huxley2006 on Thu Oct 29, 2015 04:05 PM

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I can tell you I actually went to work every day during treatment. I took the subway to Columbia and then after Radiation took a subway to my office downtown.

I am in my 40's.

The initial treatment for Brain Tumors (Surgery, Temador and Radiation) is not usually debilitating.

Every situation is different but treatment itself doesn’t need to necessarily stop her from moving forward with her life.

Hux...

 

RE: Have 21 y/o daughter just diag wih GBM

by TimW43 on Fri Oct 30, 2015 03:01 AM

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On Oct 29, 2015 4:05 PM huxley2006 wrote:

I can tell you I actually went to work every day during treatment. I took the subway to Columbia and then after Radiation took a subway to my office downtown.

I am in my 40's.

The initial treatment for Brain Tumors (Surgery, Temador and Radiation) is not usually debilitating.

Every situation is different but treatment itself doesn’t need to necessarily stop her from moving forward with her life.

Hux...

 

I did as well. Back to work 3 weeks after surgery. But there were times during chemo/radiation I had to cut the day short.

I know going back to college is not something that can be done spur of the moment. Would hate for her to enroll, then find it is too much. Might be better to gain strength to make the final push for that degree. But each person is different. Going back too soon might be setting up for failure, and that would not be good, given all she's been through. Also might not be a good idea to be around so many people in winter with an immune system not 100%. Tough decision. Hang in there, and God bless.

RE: Have 21 y/o daughter just diag wih GBM

by goospanish on Fri Oct 30, 2015 03:33 AM

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She could do some online classes.   This will help her get her degree.

RE: Have 21 y/o daughter just diag wih GBM

by momlooking4cure on Fri Oct 30, 2015 12:15 PM

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All good suggestions!  Thank you.  Since this is so new to us and so sudden, it is hard to know what to do that is best for her.  We are hoping if she decides to go back, she will opt for part-time to give herself plenty of rest time.

RE: Have 21 y/o daughter just diag wih GBM

by momlooking4cure on Fri Oct 30, 2015 12:16 PM

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You are right.  I asked her college about that.  They were not receptive with it being her senior year, but I have not even begun to fight for and with her regarding this part of the journey and her degree, if that is what she wants.

RE: Have 21 y/o daughter just diag wih GBM

by huxley2006 on Fri Oct 30, 2015 01:22 PM

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I hope she goes back as well.

I spent many weeks just going through the motions of personhood but not really connecting (more or less a ghost).

Work, purpose and a steady routine really helped me reconnect to my circumstances and family.

 

RE: Have 21 y/o daughter just diag wih GBM

by rulebreaker on Fri Oct 30, 2015 11:58 PM

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I was had a crani 9/30/14 and was offically diagnosed on 10/4/14 with GBM at the age of 20. I did 6 weeks of radiation and chemo, then took a month off and now I'm doing Temodar once a month. I didn't work or go to school until the end of December, then I eased myself back into it. Started working full time after Christmas, took an online class during the summer and now I'm working full time and going to school part time. I've missed one day of class due to side effects of the chemo. I hope this helps. I will keep her in my prayers!!

 

Kenzie

RE: Have 21 y/o daughter just diag wih GBM

by TimW43 on Sat Oct 31, 2015 12:14 AM

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On Oct 30, 2015 11:58 PM rulebreaker wrote:

I was had a crani 9/30/14 and was offically diagnosed on 10/4/14 with GBM at the age of 20. I did 6 weeks of radiation and chemo, then took a month off and now I'm doing Temodar once a month. I didn't work or go to school until the end of December, then I eased myself back into it. Started working full time after Christmas, took an online class during the summer and now I'm working full time and going to school part time. I've missed one day of class due to side effects of the chemo. I hope this helps. I will keep her in my prayers!!

 

Kenzie

WTG Kenzie. Sounds like you also have a positive attitude, which is almost half the battle. I have to smile about it or I could just cry.  ;-)

I love the one liners now "that's a no-brainer" or "If I had half a brain".

God bless you.

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