Brain Cancer

P.-

A friend of mine is a brain tumor survivor and one of the founders of Be Head Strong (www.beheadstrong.org), a non-profit organization based in KC for information and resources for those with brain cancer/tumors. They are a tremendous resource and support. I encourage you to get in touch with them.

I wish your MIL all the best.

Yours in health,
Dr. Alyssa

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P.,
Sending my thoughts, hugs, and prayers to your family.
Brain cancer is a very rough diagnosis, as I'm sure you know.
I haven't personally been affected, but did have a couple patients when I was in rotations that dealt with it.

A glioblastoma is a type of "astrocytoma" and you are right, glioblastomas are considered Grade IV tumors. They are a primary tumor, meaning that they are mutations of the brain tissue itself and not metastatic from another part of the body. They tend to be quite aggressive, forming their own blood vessels to serve themselves and allow them to grow. They also tend to have different types of cells involved in a single tumor, therefore, multiple types of treatments are often needed (Surgery, radiation, chemo) to get the different types of cells. Honestly, the prognosis is usually not great for this type of cancer, but then again, it is not often that they can get so much of the tumor by surgery! So it sounds like your MIL was very lucky, had an excellent surgeon, and her prognosis is likely MUCH better than most with this type of tumor. I have no idea when it comes to survival rates/years/etc. but wanted to just give you the little bit of info I remember from several years ago. It sounds like she has the best case scenario of this rough diagnosis.
Never lose hope!

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Yes, my awesome dad, who I loved so dearly and was so close to, died from this very cancer 2 years ago next month. I know A LOT about it. I was with him every step of the way. Please Email me and I will help you out with whatever you need or will be your support for this over the next year to two. It is VERY, VERY hard and I had a friend whose father was also lost to this. It helps to find a support system. Oh, my heart goes out to you. WHat can I help you with? ____@____.com or ____@____.com. I would be happy to be your contact throughout this. I have a lot to offer abou it.

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I don't have experience with this type of cancer...just my own...but my best advice is to take her to Siteman Cancer center off Kingshighway...there are 2 kinds of cancer Dr's one are specialist or are general...take her to a brain cancer specialist...they only pratice that type of cancer and stay up on new developments...I am down in Houston at MDAnderson...because Siteman had nothing else for me...just don't waste anytime...Good Luck...

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I have dealt with cancer....although not brain cancer...with my Mother....and I helped a neighbor...some years ago who's wife was dying of a brain tumor...so I have some experience. First of all...let me tell you how sorry I am and I hope that your family has peace and comfort as you deal with this.
My first guess is that when the doctor told you it was Grade 4 he might have meant "Stage 4" and if he did...that means it has already spread to other parts of her body. Did your MIL have breast cancer or some other form of cancer sometime in the past?? Brain cancer can frequently be a result of some other form of cancer....I Believe the medical term is "metastasized". I would rely on her medical doctor for advice as to what to expect. I can tell you to expect exhaustion and possibly extreme nausea from the chemo and radiation. Each type of treat varies...and how each person reacts to it varies...her doctor can help you know what to expect. One suggestion is that if and when the doctor tells you that she should be involved with Hospice....dont hesitate to call a Hospice Organization. They will be an endless source of support and help for you...like angels here on earth!!! They are also an excellent source of information...telling you what to expect next...sort of a "timetable" for you.

Concentrate on making your MIL's time as comfortable and filled with love and happiness as you can. Make memories for your children with their Grandma...and let them be as involved with her care as they can or want to be....it will make them much more caring and loving people to care for a loved one. Even if it is just sitting visiting with her...little things that young people can do.
God bless you all
R. Ann

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P., I want you to know that I will be praying for you and your family. I was diagnosed with cancer last year and I know how hard it can be on the family also, not just the patient. The Bloch Cancer Foundation is an amazing group that can help with any questions that you or your MIL may have. You can call them at ###-###-#### or visit their website www.blochcancer.org.

One thing that helped me very much getting through chemo was just to celebrate each day - sometimes even a few hours. (My son was 14 months when I was diagnosed, and I'm a SAHM. I did the best I could to maintain his schedule and keep his world as normal as possible.)

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Morning P., I'm sorry i don't know anything about this type of cancer, and i'm hoping you will get some responses to help you. But i just wanted you to know that I will keep you and your family in my prayers.

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Both my parents had brain tumor and brain cancer. My mom had surgery to remove the tumor from her brain in the early 1970s. Gathering all the tumors that were spread all over her brain, the size ended up to be like a grapefruit. During the surgery, she lost vision in one of her eyes and sense of taste. About ten years later, the tumor returned. She had another surgery, and that time the size was like a pea. More years passed, and it returned. She opted not to have a surgery. She felt she was too old for that, and she wanted to die anyway. Ironically, she lived to be 88 years old and passed away last December from natural causes. Whereas with my dad, in 1995, my parents' friend from Canada paid them a visit and since she had not seen them for a long time, she immediately knew something was wrong with my dad. At her suggestion, my dad saw his doctor and was diagnosed with brain cancer. It was quite a shock for us all. The doctors recommended only radiation treatments due to his age (he was 78) and emphysema (spell?). He lived only seven months and died seven weeks before my youngest son was born. If he had not received radiation treatments, he would have been gone in three months, but the treatments bought him four more months.

You just never know how long your MIL's brain cancer will be. It can be quick or it may take a long time. It depends on what kind of brain cancer she has. There are various brain cancers. You will have to do a lot of research on this matter like my sister did on my dad. Talk to your MIL's doctor and ask what kind of cancer she has. If her doctors are optimistic, it may be good news then. However, you can insist that they be honest with you.

Good luck and I hope your MIL is in remission and don't get it back again!

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I don't have any advice I just wanted to extend my prayers to her and your family. No matter what making the best of the time she has left with the family is what will matter in the years to come. Make her comfortable and be patient with her is my suggestion. GOD BLESS!

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Dear P.,
I am a breast cancer SURVIVOR! "The Wellness Community" is a place where you can find support and information. And it's free to all cancer patients, their family members and caregivers. I don't know what I would have done without their support and the friendships I have made there! The programs and support groups are wonderful - I could go on and on but I won't! Give them a call, you won't regret it! S.

The Wellness Community
1058 Old Des Peres Rd.
St. Louis, Mo. 63131
ph: ###-###-####
(near Manchester and 270)

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Hi P.,
I don't have experience with this but, I would like to recommend a very good book about Rene Cassie, a Canadian nurse that has cured cancer with herbal tea. You can try to find the book at your local library. My library borrowed the book from the Jefferson Co. library in CO. It is called "Calling of an angel" by Dr. Gary Glum. Dr. Glum suffered greatly after publishing this book.
http://www.cancer-solutions.net/DrGlumInterview.htm
If you are interested in the tea, I recommend going to
http://www.herbalhealer.com/
http://www.herbalhealer.com/essiac.html
I hope she has many more wonderful years ahead.
God bless you and your family, K.

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My stepdad who died in April was a survivor for 5 years. he never completely regained all his ability but he was not in a nursing home for the last years of his life like his nuerologist said he would be. I think those are amazing doctors with so much knowledge that they often times forget how to be compassionate towards the family. I am saying that listen to the doctors but dont take offense ask for clarification and never give up on the person you know and adore. enjoy every moment evan if they stink (literally as your cleaning up after them) and find laughter in what ever you can. Sadly the end will come but it doesnt have to be a negitive ending. also on a note that your not asking about at this point, have the conversations with her and your husband and any other kids she has as to what she wants throughout the process. get the durable power of attorney for medical care, know if she wants to be ventalated or recessatated.

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Hey, you might want to check out beheadstrong. It is a group started by my cousin and his wife. My cousin had brain cancer over 5 years ago. They are a big organization now and help lots of people and give lots of support. My cousins wife is Gail Mullin and loves to talk about brain cancer and help people out. Hope this helps.

A.

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I am so sorry to hear about your situation. I have not had experience with brain cancer, but my husband is a 1 year testicular cancer survivor. I know it is so hard to hear the news, and it is so scary. The one piece of advice I can tell you that others have not already, is that doctors don't usually tell you how nutrition plays a part in health and healing. Once my husband was diagnosed, I started reading and doing research. I discovered that cancer cells live off of sugar and acidic environments. His oncologist never mentioned this while going through treatments, but it would have been helpful to know he should avoid those things. I'm not sure is this would apply to brain cancer, though, because not everything crosses the blood-brain barrier, but it couldn't hurt to do a little reading about it and keep her body as healthy as possible with nutrition to give her a better fight. A book you could read is called "Nature's Cancer Fighting Foods." All the information you will find may be a bit overwhelming, but one main thing to remember is for her to avoid sugar and acidic foods (remember sugar is included in white breads, processed foods with high-fructose corn syrup, etc. It hides everywhere).

Anyway, not sure if this helps any, but I hope it does. I will also be praying for you, her, and your family. Prayers and support are what got us through it.
God Bless

Unfortunately, yes I do. I am so sorry to hear of her diagnosis; it's a terrible disease. The brother of a good friend of mine lost his battle after about 18 months, and my husband's uncle (I guess that makes him my uncle-in-law?) is currently fighting it. He was diagnosed with glioblastoma multiforme in July last year.

Hopefully her oncologist is providing some good information and support groups for your family. There is an organization called Head for the Cure (it was established in memory of my friend's brother) that raises money through a 5K event that takes place every September. Their Web site has some links to some good resources - www.headforthecure.org.

I will be thinking of your family and please don't hesitate to contact me if you want to talk one-on-one. Good luck.

My dad died of Glioblastoma in 2000, 5 1/2 months after diagnosis. When discovered, it was the size of a walnut, and they were only able to remove about 40% of it during surgery. And obviously, radiation and chemo didn't do much to prolong things. Not all go this fast, but you are right, overall the prognosis isn't great.

Enjoy life right now. Take it day by day. Seek out some of the research programs etc and see if they can offer more, especially if they were able to remove as much as it sounds. Best of luck to you all.

My mom was diagnosed with AML 3 days before I had my youngest son. That was in Dec 02.
After treatment she went into remission...it was shortlived and relapsed in November 03 (2 weeks before we had her and dads 25th anniversary party planned for). In June 04 she had a stem cell transplant...and was in remission until August 05. More treatments, more stem cells, and she was in remission from the AML until January 14, 2007.
BUT the cancer had moved to her head...I say she was in remission from the AML because it was not in the rest of her body, only her head. She had a tumor... It affected her weird, memory problems and some other things that had never been a problem...
On my birthday, Jan 4, 2007 my dad found her sitting in her recliner when he was leaving for work and she was in a coma... Dad said she couldn't sleep and was tossing and turning so she went to the living room so she wouldn't keep him awake.
She spent 2 weeks in the hospital, and was deemed completely brain dead...she had had a stroke and the cancer was not even what took her. We took her off the breathing machines on Jan 12, 2007 and she died on the 14th. She was 55.

I know that every person is different. I would watch for memory problems, and just out of the ordinary things... The cancer seems to effect the brain and how it reacts to things. If we had known what we were looking for its nice to think that we could have helped her better.
I will be thinking about you and your family.
Something I had to tell myself daily
Live, love, laugh. Be strong, Be you. Breath.
It was what my mom wanted...

Dear P., I can't offer advice like the others have. I will give you the comfort of knowing I will be praying for you and your Mother in Law. Keep your spirits high, faith in Him who created us, every day is a blessing and memory made. No One but God knows the days we have left, just make each one special. Your son could read to Gr momma, he could share his school time with her. What he did, what they learned or studied that day. If your little girl likes to color or draw what fun that could be with Gr momma.

Be Joyful in Hope, Patient in Affliction, Faithful in Prayer. Romans 12:12

God Bless you all with many memory's made through your journey to Wellness.
K. Nana of 5
Missing my mom dearly everyday. Alzheimer's took her from us this past August. We have many happy memory's, even very sad ones. Make your time Memorable