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Please help if you can

MR_SAD's picture
MR_SAD
Posts: 91
Joined: Nov 2008

The Love of my life for the past 25 years was diagnosed with Lung Cancer and
a metastic brain tumor. She lost the use of her left side and had to have Brain
surgery to remove 95% of the Brain tumor followed by Radiation to her Brain and Lung.
She is very weak and canot have chemo. Is there any hope for me? The Doctors tell
me no. They have said She only has 6 months. Bed Pans, Baths, Kids, Work, the Household how are you suppose to cope, This has got to be the toughest thing I have ever had to face.
Has any one had To deal with seziures. These are comming more often and they are becoming
worse. What should I do? Should I try and Keep Dylantin in her on a countinious basis?

zahalene's picture
zahalene
Posts: 624
Joined: Nov 2005

Any number of us would show up at your door TODAY if we could and do whatever we could to help. Unfortunately, that can't happen, BUT there are other people and resources you can tap into. Family, friends, neighbors, the American Cancer Society in your area. Do not try to do this alone. Ask for help and ask and ask and ask if you have to until you get a support system in place.
If you are not an 'organizing machine', then grab someone who is and get a schedule of tasks posted in your home. Whenever anyone calls or stops by and says 'can I help?' be ready to say 'you bet you can' and give them an assignment. Most people are glad to help when they know exactly what to do.
Obviously, these suggestions won't solve your problems, but they will help you cope and be all you can be to your wife for as long as she needs you. None of us are super-human. We are just ordinary people who find extraordinary strength and courage when we have to.
Good luck and God bless you all.

MR_SAD's picture
MR_SAD
Posts: 91
Joined: Nov 2008

Thanks for your reply. If it was not for my Church and Community
I could not handle this. My strength comes from the lord.
Thanks again for your Thoughts.

hunpot's picture
hunpot
Posts: 90
Joined: Nov 2008

IM so sorry you have to endure this with your loved one it is difficult but with mom recently passed away from her brief battle i belive it makes us stronger and better. YES there is HOPE. Dont give up hope keep the strength and positive attitude and quality of life and time spent and comfort is most important at this time. But never give up. Her body may need time to rest and heal and then she may start treatments again or cancer could stop growing(always hope even when we know the worst could happen)
Get Hospice involved if you can they have volunteers to help with shopping, cleaning, errands and social workers, transportation, to help you get organized and put a schedule togther if needed.
Somehow we manage to cope and deal when there is a tragedy and illness. I had to take care of mom who lived 25 minutes away for the last 3 months and i had 4 kids and hubby at home and worked parttime nights,It was hard but my body and mind let me work it out somehow.
Best of Wishes and God Bless

Mannie
Posts: 51
Joined: Oct 2008

I was diagnosed with brain cancer and originally everyone thought I was not going to live. If her brain resect was 95% she is lucky that the surgeon was able to remove so much. Have you thought of a second opinion? I know where I live everybody gets 2nd opinions and find that Pittsburgh is the best area for brain tumor treatment because there is a larger amount of people with brain tumors in this area than almost everywhere else in the country. So, my neuro-oncologist is running a lot of clinical trials for people with brain tumors. He's even working on a brain tumor vaccine - I'm completely serious. Have you asked your doc about taking Avastin and CPT11? Those are both fantastic treatments for people with no other option. However, they are chemotherapy. They've been used for brain tumor patients for about 3 years with amazing results but the problem is that they're marketed for people with colon cancer and some oncologists are hesitant about prescribing it for brain tumors. I've even heard of some people being helped with RU-486 but I don't know anything about that personally. I know a woman that used radiation once, it didn't work well so she was irradiated again and took thalidimide to calcify the tumor. That was almost 10 years ago and she was not supposed to live either because the tumor was really aggressive. I'm not sure where your wife and you are being treated but smaller facilities are really not always well equipped to handle brain tumors.

I had a series of seizures when we were on vacation that were caused by an anti-depressant I was taking for neuropathy. There are A TON of medications both OTC and prescribed that do not have good results in people with brain tumors. ANY hormones will grow brain tumors. Women taking any kind of hormone replacement therapy (including birth control pills) absolutely have to quit taking them because brain tumors in women have estrogen receptors so they will grow, the estrogen will feed it. That includes ALL forms of estrogen even the estrogen found in all dairy and all soy products. I drink rice milk and eat rice milk products.

Anyhow, my big seizure on vacation was the final one. It caused me to be life flighted and hospitalized for a while. It was terrifying for my family and the volunteer fire fighter that came to help my family. I don't know the details of what happened because I was completely unconscious and was turning blue because I quit breathing but it was the quietest, most peaceful feeling I've ever experienced. I was put on dilantin and neurontin. Dilantin is accumulative, it HAS to be taken regularly to maintain the therapeutic level or it will not work. It doesn't wear off like some others, like neurontin, do. I was taking 200mg twice a day of dilantin for almost a year when my levels just kept decreasing because I was also taking Lasix and was peeing out all the dilantin I was taking. That's when I increased my neurontin level. Neurontin made me nuts but I'm seizure free now, that's a good pay off.

In my house I had to accept a lot of help for quite a while. My aunt came over and watched my son while I went for radiation treatments and she kept him all day so I could rest. My son was 15 months old when I was diagnosed. I was 25. You need to take care of yourself because I'm sure your wife is noticing that you aren't.

Please take good care of yourself and I will say a prayer for you to have the wisdom to know what to do and accept anything that comes along.

MR_SAD's picture
MR_SAD
Posts: 91
Joined: Nov 2008

Thank you for your help. I needed help about the seizures.
Thanks again

Mannie
Posts: 51
Joined: Oct 2008

Another alternative to pharmaceuticals is the "Epilepsy Diet". It's a ketogenic diet. There's lot's of information about a ketogenic diet reducing seizures either completely or almost completely. Of course you should definitely not stop her meds. She will withdrawal and that won't be fun for anyone. I get that effect from neurontin if I take it late. Anyway, it's basically a high fat/low carb diet. It's difficult to be pleasant when a person 1st starts a low carb diet, trust me. She'll probably be real mean but if she can stick with it for 1-3 months you should see a difference. I don't know for sure because I'm not a medical professional, I just know what I've read and heard from 1st hand accounts.

Where is your wife's brain tumor(s)? Mine is in my right frontal lobe, right along my hairline. So, I have a scar on 3/4 of my hairline. It goes from my right ear to about 3 inches up from the other ear. Many people tell me that they had gamma knife or cyber knife. I tell them that I just had knife, there was no cyber to it.

If you have anymore questions or need some help with research, I'll do my best to help you out. I'll just e-mail my doc.

I know that dealing with a person's who's debilitated is difficult. After I had surgery my mom had to help me bathe, make meals for me, brush my hair, help me get dressed, and so many other things. It was really hard for all of us. I was constantly tired. Brain surgery causes atrophy. I was really weak from my muscles turning to mush because of the trauma that brain surgery caused. That was really hard because I went from being a single mom who was working in the evenings and on weekends while working on a master's degree to a blob.

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