Caring4Cancer

My husband had surgery to remove a large 4.4 cm brain tumor located in the front left lobe.  The tumor was malignant and he has just started on his radiation and chemo treatments.  Please contact me if you have anyone that you have cared for or know who has this cancer.  I'm so frustrated!! Thanks.

Thanks for your reply. I'm so sorry that you find yourself in this position and We will add you to our prayer list.

Is your Wife on any chemo at this point and if so, what is the name of the drug(s)?  Did the tumor reoccur?  Are you the primary caregiver for your wife?  Do you have anyone or any agency to aide you if needed?  Who do you go to for your strength or to just share your frustrations, concerns, etc.  Thanks for your time and I do appreciate your every effort.  Psalm42 

Thank you for your prayers and support!!

I am the primary caregiver for my HUSBAND.  I have family nearby to aide me and a supportive church family as well.  At the moment I do have a number of friends and family that have told me that I can share with them anything at anytime and they will always listen and be supportive.  I am a very private prerson so I do tend to keep things to myself.  I realize that this situation is not healthy and will need to change soon.  Thanks for you questions.  Psal42 

Thank you for your response and I do send my prayers and support.  Please tell me where you go for your support and are you the primary caregiver?

 Hello-

They found a malignant tumor on my brain last fall.  I had two surgeries, 6 weeks of radiation while on chemo, and than an additional 6 months of chemo.  As of now I am cancer free.  I will have MRIs every three months for the next two years and see my doctors. The chemo I was on was Temodar, and I hated it!!  The tumor I had was an astrobastoma which is  very rare.  It was a rough road, but I got through it and now I feel like a normal person again.  I know it is tough but I also know I would have never gotten through it without my husband.  Caregivers give the patients strength.  I hope things turn out well for you and your husband.

Thank you for your reply.  I'm also very thankful for your recovery and for the miracle God has bestowed upon you!! My husband is going for his first MRI next week and will probably begin Temodar for 5 days a week for one month then skip the next month.  His hands still tremble and he gets exhausted quickly.  He eats will and beginning to use our treadwheel everyday. He is very active doing chores around the house but is usually ready for a nap around noon.  His memory is is so much improved with the taking of Provigil for his memory.  He is also tapering back on the Dexatron and the doctor thinks that the hand trembles will abate.  Did you have any problems in these related areas and if so, how did your husband handle the memory lapses?  Were you able to work out side of the home?  What problems did you have while on the Temdor the second time on it?  How long were you on the chemo?  Months or years?  Do you now have any side affects?  Thanks for your time and have a great day!! Psalm42

 I did not have any problems with my memory.  The tumor was on my occipital lobe, which controls vision.  I was on Temodar for 5days a week and than would get three weeks off, and we continued this schedule for six months.  During radiation I was 120 mg of Temodar and than they upped it to 260mg.  I had a hard time with the big dose.   The first month they tried it, by the fourth day I was throwing up the pills.  Than by day five I was throwing up so much I had to go in for IV fluids.  Than I had over a month off because I had another surgery.  When they started back up again I was very sick from the Temodar.  I was throwing up everything and had to go back in for IV fluids.  Thats is when they reduced the dose to 200mgs.  Than I was ok.  I was very tired and lost my appetite when on the Temodar.  Certain things I could not eat or drink. We stopped the Temodar after six months because I am only 26 and my doctor was not sure if it would hurt my fertility. When I was on Decadron I had a lot of side effects.  I could sit for very long, I was not sleeping very well, and I gained a lot of weight.  I always felt hungry and thirsty. Right now off of everything I feel like a normal person.  I am a teacher and worked a lot of the year.  I missed 6 weeks for my surgeries, I left early everyday for radiation, and missed days when I was sick on chemo.  The other days I went to work, but it was not always easy.I hope this helps.  I am sure it is tough but just keep on hoping.

I do remember now that my hand trembled when I was on the steroid.  It was hard to write, hold stuff, and put on make up.  Once i was off of the steroid my hand stopped. 

Your input is very much appreciated!! This last week we had reduced the decadron to 1 1/2 pills a day on the way to reducing the dose to o.  On Wednesday, Paul begin to fall, became weak, and could not keep his balance.   We finally received a callback from the Doc's office and were advised to increase the dosage to 2 pills a day.  We will continue this until the end of the month.  I can see a difference in the trembling of his hands already as they are much more steady.  We are looking forward to the day when Paul does not have to take that med.  We begin the chemo tomorrow.  5 days of 450 mg of Temador.  We pray that he does will.  GBM brain cancer is the most aggressive and he is already in stage 4.  We try to keep things are normal as possible but it is hard with all that meds and doctor appointments.  We both get tired easily and it takes approx 1 hour to reach our doctor's offices.  The car is now on autopolite.  Thanks for the info and pray for us. Psalm42