One patient with glioblastoma still alive nine years later
by Razorbackmom on Fri Apr 06, 2012 03:46 AM
by Tgoodbody on Fri Apr 06, 2012 03:58 AM
by Abbala on Sun Apr 08, 2012 09:01 PM
You daughter desperately needs to eliminate the stress she is feeling. She needs to gather her strength to fight the disease, and she can do it and succeed with your support. Forget about school, about the fall and get real about this diagnosis. My oncologist told me at my three-month check in that stress contributes to getting lymphoma. You can't put cancer treatments and getting well on a timetable for August. She might have to miss a year of school. So what? She's young. School will always be there when she's well again.
by Rosies_mom on Sun Apr 08, 2012 09:29 PM
I'm a mom and cancer patient too. I am sorry to hear about your daughter. I kind of disagree with the previous poster. I think your daughter should take it one day at a time and see how she is feeling. Sometimes its nice to have something to take your mind off the cancer (if that's possible), to have a reason to force yourself to get up, and most importantly for her to take back some control over her life.
She's a young girl and needs to be with people her age. She's young and strong and can fight this. Stay positive. Maybe she will have to do part-time or on-line. And by all means she should let the university know to see how they can accomodate her. She should not feel embarrassed by this, they want her to succeed.
Definately a second opinion is a good idea.
Praying for your daughter,
by GrammaKitty10 on Sun Apr 08, 2012 09:38 PM
On Apr 08, 2012 9:01 PM Abbala wrote: You daughter desperately needs to eliminate the stress she is feeling. She needs to gather her strength to fight the disease, and she can do it and succeed with your support. Forget about school, about the fall and get real about this diagnosis. My oncologist told me at my three-month check in that stress contributes to getting lymphoma. You can't put cancer treatments and getting well on a timetable for August. She might have to miss a year of school. So what? She's young. School will always be there when she's well again.
On Apr 08, 2012 9:01 PM Abbala wrote:
I was diagnosed with an incurable NHL 15 yrs. ago. 8 yrs. ago I got HL and had treament. It has never returned. I still had the incurable one and 2 more up almost 2 yrs. ago. I had a CT/scan a couple weeks ago and it showed no signs of cancer and my organs looked fine. I went through chemo and radiation 4 times and almost died 7 times. Yet here I am cancer free. Since the incurable NHL came back 3 months after treatment last year, I wasn't surprised. This scan showed no signs of cancer and so I know God healed me because I hadn't had anymore treatments. Hodgkins Lymphoma is easier to treat than NHL. God came to me when I was as low as I had ever been, one week after diagnosis. He calmed me instantly and said everything will be okay. So I went on with my life and have done through all the treatments, etc. I was patient and calm and leaned on the Lord for my healing, not the experts. God used them to heal me but not this time. He wanted me to know that He healed me to His praises and glory.
by Razorbackmom on Sun Apr 08, 2012 11:50 PM
Thank you all that have written me with your support. We went to the Oncologist on Friday and found that the HL is stage II A/B - he said that her symptoms are not fully one way or the other. He performed a bone marrow aspiration and we will find out the results of that on Tuesday. He wants to put her on a treatment plan of 6 treatments of Chemo every two weeks and then radiation. For her, she wants to try to finish up school a little early so that she can start on the first of May with her treatments. This way she has a really high chance of getting back to normal in the fall. This is what she wants. She understands that her health comes first, but also is willing to fight this with all that she has. The doctor recommended that we see a reproductive doctor for possibility of freezing some of her eggs because there are studies that chemo/radiation can cause infertility. We were able to get into this doctor on Friday as well - this seemed like a real joke to me. Sorry if I offend anyone. It was just weird and for 13K + yearly storage fees we can freeze some of her eggs. It almost felt like we were at a car dealership. It was 4:45 on Good Friday and this doctor was more than willing to do a blood test and perform a sonogram - this is what did it in for us. We told him that we would get back with him. As we walked out laughing - more from the shock of what we had went through and the fact that we were basically had more information that we needed in one day. We were exhausted, but were still able to laugh at the fact that this was an odd doctor’s appt.
Today my daughter left to go back to college. I hated to see her go, but I know that she wanted to get back to a couple of days of normal. Next Friday we have an appt. with a Radiation Therapist and she has an EKG and pulmonary test. We are also trying to get into a second opinion doctor on the following Monday before she goes back to school.
Tgoodbody - Praying for you and your daughter, hope her new treatment plan is helping her.
Abbala - Thank you for your comments, we are taking one day at a time and are putting her health as the number one priority. She understands that, but she also loves her friends and college very much, so she is going to do whatever she has to do to fight this and get back to normal.
Rosies_mom - Thank you for your prayers. She and I have a support group of family, friends and new friends helping her get through this. For her treatment this summer she has many friends coming to be with her and help her get through this.
GrammaKitty10 - My heart, thoughts and prayers go out to you. You are a strong person, just like my daughter. Right now it is a struggle for her because she doesn’t understand why God would do this to her, nor do I. Why wasn’t I the one that? I told her that God works in mysterious ways. She wants to be a pediatric nurse and her dream is to work at St. Jude’s. Maybe this is a preparation to the dream. Not sure, but it is scary.
I am still scared, but have found that I have a lot of support. It won't be easy, but we will get through this.
by Rosies_mom on Sun Apr 08, 2012 11:59 PM
It sounds like you and your daughter are a great team. And its good to find things to laugh at in this craziness. People often ask why God has done this to them? I like to think that God doesn't "do" anything to us but is there to help us get through the sH$t that happens to us. Hang in there. This too shall pass.
by Tgoodbody on Mon Apr 09, 2012 05:21 AM
by Johnr_1 on Mon Apr 09, 2012 05:56 AM
HL and NHL are som of the easier ones to deal with. I work with Thousands of Cancer patients of all types and the trick is to make sure you understand how the doctors all work together and make sure they kind of get along and are 5 star doctors.
Then make sure they have a sound long term plan for each major area, to drive her into remission using the three ways cancer is treated, meaning Syrgery, Chemo and Radiation.And attack each major area
Usually nodes and obvious tumors are removed to get a clean start and then chemo gets remaining particles everywhere then Radiation to those areas where the tumors and nodes were removed. The patients that do the best are well informed and ask lots of good questions:
-- How many other cases have you had like this one and how have they done with what you are prescribing ?
-- How long will it take for each piece roughly ?
-- Will i be able to continue with work or school or should i take a break from that?
Remember you own all your notes and records, just ask for them and start notebooks at home with sections for Blood Work, Hospital, Doctors, etc.
Get second, and even third opinions.
Please continue to write. Our community is extremely, loving, caring and very supportive and we have unlimited resources at our disposal. Most of us work in or for or with large Cancer isstitutions, Clinics or just have been through it all.
Here are my personal notes:
My Best to Your Family
by Aoife on Mon Apr 09, 2012 08:38 AM
I was 32 when I was diagnosed with oesophageal cancer but I did not have enough time to get my eggs frozen as it woukd reduce my already very slim chances of survival. It was incredibly tough on me. If you have enough time and it does not affect her treatment then certainly get her eggs frozen. I was incredibly lucky and have a son and a daughter since diagnosis but the amount of heartbreak I felt over potentially not being a mother was beyond words.
I am now 38.
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