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Whole Brain Radiation ???


rwielatz1

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Hi everyone. I am fairly new to this list. My dad was diagnosed about 8 weeks ago with stage IV NSCLC. It has spread to his brain. We are still in shock, but the docs have moved quickly and he is undergoing chemo and daily radiation to the chest. He has also had stereotactic surgery on the brain tumor. They want to start whole brain radiation next week. The doctors told my stepmom that this can cause dementia. Does anyone have any experience with this? My dad was so healthy up until he started having rapid onset of severe memory problems and confusion. They actually diagnosed the brain tumor first and then found the lung cancer.

Can you really have quality time left with all of this chemo and radiation ??? It just seems so brutal. They have not given my dad a timeframe and I know that everyone is different, but does anyone know how long he could survive?

Thanks, Rita

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Hello, Rita, and welcome ....

What kind of chemo is your dad on? How much/many lung(s) is(are) involved in the primary tumor? How large/many are the brain mets?

There is a possibility your dad may have more time than you might think if the response to the treatments are good.

For us to share our experiences with you, it would help if we had answers to the questions I asked above.

You have come to a good place for positive support and caring. The people here are as a family, warm and encouraging and supportive.

I wish your dad well in his treatments. I hope the stereotactic can help with his brain fuzzies, and he can be a little more coherent now.

Our prayers are with you and your dad.

MaryAnn

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Here is some more information that might help to know. My dad's brain tumor was abuot the size of an olive, the lung tumor was about 2.5x bigger. His chemotherapy drugs were cystplatin and another one that I can't remember the name of....seems like it began with tax....something. I am not sure.

Any information would be very much appreciated. Thanks.

Rita

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Rita, The chemo/radiation to the chest is similar to what I had, and it killed my tumor. Chances are good that there is a chemo in the arsenal that will stabilize or maybe shrink the tumor in his lung. Do you know if lymph nodes are involved?

I don't know much about brain mets and radiation, but I do know there are survivors here whose tumors have been treated with radiation, both specific (targeted) and general (for microscopic) and have had good luck.

Read the other message threads, and you will see that this is not necessarily the end of the world.

Prayers to keep you and your mom strong to help your dad.... and for your dad to do well.

MaryAnn

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Rita,

Mu husbands LC was also first diagnosed because of a brain tumor that caused a seizure. He had brain surgery and 14 whole brain radiation treatments as his first line of treatments.

He has dizzy and balance problems, now using a cane. There is some short term memory probs but that seems to be getting better all the time and is not really a problem. Earl is 61 - he does not have dementia.

Hope this helps.

Ginny

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Hi Rita,

As I sit here I have tears in my eyes. My Wonderful Husband had whole brain radiation earlier this year. I know exactly where you and your family are coming from.

He went to the Doctor in March so he could get a refill of his arthritus medication. The Doctor did a x-ray of his chest. The x-ray showed a tumor. Then he was sent for a CT scan which showed the tumor much better, which we later learned was 5.5 cm. He also had a headache for over a month. He was always very busy and always healthy, and just didn't have time to be sick.

The Docrtor sent us to a Plumonolgist. He set him up for a biopsy of the tumor. It came back cancerous. He then set him for a PET scan. During this time his first two fingers on his left hand were getting paralyzed. That was spreading pretty fast. Within two weeks his whole left arm was paralyzed from the shoulder. He is left handed and I can only imagine the frustration he felt during this time. The new Doctor's explaination was his body was shutting down. That new Doctor was going to send him to a throat and lung surgeon.

The radiation Doctor called us and told my husband to get the results of the PET scan. That took some doing over the phone.

From there I got my girls the list of oncologists from our insurance. They called around for a Doctor that kicked butt with cancer. We went to two Doctors. The second one walked on the exam room, took one look at his arm and grabbed the Ct scans and PET scan, called the person that did the PET scan came back to us and said he would get with that person that afternoon. This was a Thursday. The next morning the Doctor was on the phone wanting my husband checked into the hospital. The next day, Sat, he was operated on for the tumor in his brain which was about 2" and less than 1" wide.

The surgeon is a miracle worker. He got 90% of the tumor. Later that day he was able to move his arm from the elbow. He is a wonderful Doctor.

Then they started him on radiation. He already had had one treatment of chemo drugs. He had carboplatin and taxol. He received the chemo drugs every three weeks. He had radiation to his head 14x and to his lung 27x. His lymph nodes were also involved and he has a tumor to his back near his spine under his collar bone.

About a week after the last radiation to his head he was hospitalized once again. That was July 2nd. This time they did sterotatic radiosurgery to his brain. His tumor was on the right side. One things that was unexpected for us was that his hand developed a tremor. The tremor got so bad that I contacted the surgeon again. He put him through a bunch of tests for strength, balance and a couple of other things that I forget. He put him on a medication. The medication did help but made him sleep a lot. We finally cut the pill in half and it was better. It only controlled the tumor a little at that point though. But it was better than before. The only other thing that I have noticed is that he forgets things where his memory has always been great, but even that is getting better over time.

That was quite an ordeal. It is so amazing what they can do today. His Doctor's also would not give him a time frame for how long he had. So much depends on how your body reacts to the drugs and procedures. I don't think they know how anyone will react.

Since he cried a lot the oncologist put him on a depression pill. He gave him Zoloft. It helped him deal with what he had to do and gave him an oppurtunity to put his strength towards getting rid of the tumors.

One day I just happened to be checking his chemo drugs and medications on line for side effects. Well, he developed a rash on his face that is pretty large. It covers his nose, cheeks, chin and he has blotches over his eyebrows. Sometimes it is bright red and other times it is pale. He also still had the hand tremor and his feet feel numb. Come to find out the chemo medication Taxol can lead to a rash on the face. The Zoloft can cause hand tremors and the carboplatin can cause numbness in the feet and fingers. He stopped taking the Zoloft and the tremors in his hand have almost ceased. The oncologist has no idea about the rash. He also said the numbness may slowly go away or he may always have it. We finally got a disablility card for his car so he doesn't have to walk as far.

Well. once again they created a miracle. The tumor in his lung is dead (The Queen Bee) and the one in his brain (which had started to grow) was also dead (The Queen's Little Sister). There is also no cancer showing up in his lymph nodes. Hurrah!

Right now they are treating the tumor in his upper back. The chemo drugs did not kill it. In fact it had grown a little. The radiologist Doctor is worried about it because it is so near his spine. That also causes difficulty in radiating it. He is about halfway through. I think the last one is Dec 1st. We are hoping and praying it works as well as the radiation to his head, lung and lymph nodes has.

I know exactly how you all feel. It is so very scary. You feel helpless and frustrated also.

Now you know all may not be lost. My husband's quality of life is pretty good. He still can not eat certain foods because they don't taste good, but for the most part he likes more and more every week. He is also able to get out and about now. For a while he was so weak he was unable to drive. We are very happy about where he is at. He is also trying to build his muscles up. His muscles have athropied from spending so much time in bed resting. I hope your Dad is able to spend a lot of time sleeping and resting. I believe it gives your body a chance to heal and get rid of these tumors.

Keep your chin up and try to be positive when you see your Dad. He loves you a lot and it only upsets him to see you crying and upset especially when there is nothing he can to do make you feel better. I did my crying at work and scurried off to another room at home. Now we are able to joke around a lot and often about stupid things.

My heart and prayers are with you, your Dad and your family. This is a wonderful site to be on. I can't begin to tell you how wonderful these people are. I come here fairly often and just read. They are so positive and helpful. This is a wonderful group of suportive people.

Please keep me posted on your Dad's progress.

How old is he. My husband is 57. Is he still working?

My husband just received his first disablility check last month. Yeah! You might want to look into that. It takes a long time before it comes through. It will help your Dad not feel so helpless as in not pulling his share of the load and being a drain on the family. That is so important to men.

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  • 2 weeks later...

Hi Rita,

My boyfriend has the same thing your dad has..and was found the same way...head tumors first then the lung tumor. He had whole head radiation and was tired but never lost his memory. The radiation will make him tired and in that you may think he is forgetfull but I have never heard of it making them demeted. As for us he had 2 tumors in the brain with a 5 inch tumor in the lung . - stage 1v. That was in May and he is sleeping in his chair now after another round of chemo very pale, unable to stand and vomiting. He has had 2 blood transfusions when chemo put his hemaglobim down and it looks like another will be tomorrow. I'm glad this is the last of the chemo & rad. His quaility of life has not been good just longer. If he makes it through this bout he will be done. They gave him 3 - 6 months w/out treatment 6 - 9 with. They have done all they can - he is 55.

Hang tough

Hugs

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Guest Piermarie

Rita,

My mom has had both the whole brain rad and the stereotactic radiosurgery and tolerated both very well. She does seem to be more forgetful at times but other than that, she is the same as always. Her followup scans show great improvement and only one of the four lesions is still showing up but it also is on its way out.

So stay strong and positive!!!!!!!!!!!

Sincerely,

Pier

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