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need some inspiring stories

mpatelpharm
Posts: 6
Joined: Aug 2009

Hi,
My husband who is 35 y/o has been reacently diagonsed with at pontine glioma(brain stem glioma). The doctor beleives that it is a low grade tumor... however since they are not able to operate or do a biopsy.. there could be a low chance of it being high grade.
He is currently undergoing radiation 5 days a week for 6 weeks total. They will most likely put him on Temodar.. which will be 5 days/month.
I am a mother of two little girls a 1 year old and 3 year old. This is just so overwhelming for me.
does anyone have any stories they can share with me that can bring a little optimism into my life.

sue Siwek
Posts: 281
Joined: Jun 2009

you will hear many wonderful stories on this site. here is mine. nearly 10 years ago my husband was diagnosed with an inoperable brain tumor, the biopsy showed that it was a very aggressive anaplastic astrocytoma grade 3. that is cancer. he had five weeks of radiation and then stereo tactic radiation(a beam focused directly at the tumor). then he was put on temodar which did not help him. so after 2 more types of chemo he was pronounced cancer free and has been so since. you might ask the doctors what side effects he may experience from radiation and chemo. also, if he is being put on a steroid during this time be aware that many people experience sleeplessness, irritability and make it hard on the caregiver. you may want to check with his doctor. my husband did have a terrible time with the steroid decadron. he was put on an anti-depressant that seemed to ease it, i might add i went on one as well because you will find that being a caregiver can be stressful and we need all the help we can get. hopefully your husbands tumor is cancer free. keep this site posted i will be watching.

mpatelpharm
Posts: 6
Joined: Aug 2009

Sue.
Thank you for you sharing your story with me.. it really gave me alot of hope.
My husband has been diagonsed with a pontine glioma. (cancerous tumor), they beleive its low grade.. but since they are not able to biopsy it.. due to the location.. there could be that slight chance that it could be a high grade.
How did you cope with the stress?
I am also thinking about going onto a antidepressant... im so overwhelmed with my two little babies and trying to run my house and also take care of him.
I do have family that is close by to help.. but i still feel that the entire stress of being the rock of the family is on my plate.
I feel like this is a bad dream and one day i will wake up and just realize that this is not real.

Is your husband able to live a normal life, work, travel?

Monica

sue Siwek
Posts: 281
Joined: Jun 2009

you both might do well to be on an anti-depressant, ask your doctor about that. it will probably be one of the most stressful events in both of your lives. my children were adults when he was diagnosed but, believe me it was earth shattering for them. but when things get tough you find out how strong you are. my husband is disabled. not because of his tumor but because soon after he was diagnosed with parkinson's as well. they are not caused by on another it was just a rare thing that he happened to get both. as i have said he has survived nearly 10 yrs and is cancer free. the parkinson's has taken its toll on him. about 4 yrs. ago he stopped playing golf, taking walks and visiting his office on occasion until then he was fairly active. let your family relieve you when you need to get away. it sounds like your husband will have a good recovery baring any suprizes. if he is on decadron while being treated just know it will be a difficult time for him and you. it is a necessary but nasty drug. if it gets to be to much get away for a few hours. keep posting and best of luck.

aranda
Posts: 11
Joined: Aug 2009

Mrs. Sue

It is good to hear your story

My husband was diagnosed with a grade 3 astrocytoma the end of July, he had a crainotomy done early this month to remove as much as they could. He is going to start radiation monday 5 days a week for 7 weeks.

sue Siwek
Posts: 281
Joined: Jun 2009

best of luck to both of you on this journey. believe me BOTH of you are on this journey. you are his voice. if you have questions, even if you think it might be dumb ask it. the docs. and nurses are there to guide you through this. you will have to do your part in this and be aware of changes that you see for you know him best. it is so scary but hopefully all will go well and then you will both have time to grow into this situation. as i said above an anti-depressant is a good thing. i was hesitant to take it at first because i thought it was a sign that i was weak. don't make that mistake! you have both been kicked in the gut. anti-depressants take at least 3 wks. to kick in and then you must be consistent with them i.e. take everyday not off and on. talk to the doc. they can direct you. keep this site posted.

DebbieI
Posts: 5
Joined: Jun 2009

My 26 y/o son is only weeks before your husband. He began radition beginng of Aug. It took two months after for the tumor to "begin" to shrink. Keep an eye on testrone levels. My sons dropped a lot with his treatment. Now he is getting testrone cream and pains inlegs doing better.
Hang in there, and celebrate to baby steps. Keep a record of those little improvemnts. We call it 2 steps foreward, one back:)

lawslegal's picture
lawslegal
Posts: 39
Joined: Aug 2005

Hi,

I actually just published a book called, "Michael's Journey". I actually wrote this book for people like you. To inspire others. Please visit www.michaelsjourney.net to find out more.

Michael is my now 18 year old son and Michael's Journey is my diary of the last five years of his recovery from brain cancer.

I wish your family the best!

Laura (Michael's Mom)

lawslegal's picture
lawslegal
Posts: 39
Joined: Aug 2005

Hi,

I actually just published a book called, "Michael's Journey". I actually wrote this book for people like you. To inspire others. Please visit www.michaelsjourney.net to find out more.

Michael is my now 18 year old son and Michael's Journey is my diary of the last five years of his recovery from brain cancer.

I wish your family the best!

Laura (Michael's Mom)

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