Preventative Prophylactic Cranial Irradiation

Chevy4777

Hello Folks. Me again. Just want to know if anyone has gone thru this and how they did with side effects etc.

Did some research, but each person responds differently.


Thanks in Advance,


Joe

stayingcalm

I had WBR, not PCI
I had whole brain radiation, which is the same thing as PCI wearing different clothes However, a lot of people question the value of PCI vs the possible side effects. Some people have had PCI only to get brain mets anyway. I've read posts from people who have turned down PCI, preferring to wait and use radiation or the gamma-knife if a tumor shows up.

I had WBR because I already had brain mets, two of which were too small to be removed (the third was taken out) and there were possible even smaller spots showing in a PET scan.

Side effects...well, did you ever walk into a room and forget what you came in for, or go to the store for something specific and come home without it, go on the internet to look something up and totally lose track of what you were there for? Welcome to the world of WBR! Short-term memory loss - not so much loss, as "delay", as someone put it, possible hearing loss...I believe my hearing has improved some since the initial loss, however. I compensate for the memory "delay" by writing down names and numbers immediately, etc..

Its doable, but I think If I had had the choice to have the radiation as a preventative I would wait. If you are doing chemo, ask your doc what chemo you can do that crosses the blood\brain barrier. I take Tarceva (after a prior clinical trial drug let the mets in) which, if it works for you, would be wonderful.

Luck be with you!
stayingcalm

catcon49

stayingcalm said:

I had WBR, not PCI
I had whole brain radiation, which is the same thing as PCI wearing different clothes However, a lot of people question the value of PCI vs the possible side effects. Some people have had PCI only to get brain mets anyway. I've read posts from people who have turned down PCI, preferring to wait and use radiation or the gamma-knife if a tumor shows up.

I had WBR because I already had brain mets, two of which were too small to be removed (the third was taken out) and there were possible even smaller spots showing in a PET scan.

Side effects...well, did you ever walk into a room and forget what you came in for, or go to the store for something specific and come home without it, go on the internet to look something up and totally lose track of what you were there for? Welcome to the world of WBR! Short-term memory loss - not so much loss, as "delay", as someone put it, possible hearing loss...I believe my hearing has improved some since the initial loss, however. I compensate for the memory "delay" by writing down names and numbers immediately, etc..

Its doable, but I think If I had had the choice to have the radiation as a preventative I would wait. If you are doing chemo, ask your doc what chemo you can do that crosses the blood\brain barrier. I take Tarceva (after a prior clinical trial drug let the mets in) which, if it works for you, would be wonderful.

Luck be with you!
stayingcalm

Not to side track anyone
But Stayingcalm you didn't have mets when dx with cancer? And they found them 2 3 years after?

stayingcalm

catcon49 said:

Not to side track anyone
But Stayingcalm you didn't have mets when dx with cancer? And they found them 2 3 years after?

Mets
Hi Catcon,
No, I didn't start out with mets - I was on a clinical trial drug for about two years after having had treatments with Cisplatin w/Etoposide, and then Taxotere, as well as concurrent radiation (40 something days of Tomotherapy). I would have happily continued on the XL999 forever, but as I was waiting for a Dr. appointment one morning I had a sudden inability to make my right arm go where I wanted it to go, and that was the beginning of my journey with brain mets. Which led me through surgery, WBR, and finally on to Tarceva, where I still am

Deb

Chevy4777

stayingcalm said:

I had WBR, not PCI
I had whole brain radiation, which is the same thing as PCI wearing different clothes However, a lot of people question the value of PCI vs the possible side effects. Some people have had PCI only to get brain mets anyway. I've read posts from people who have turned down PCI, preferring to wait and use radiation or the gamma-knife if a tumor shows up.

I had WBR because I already had brain mets, two of which were too small to be removed (the third was taken out) and there were possible even smaller spots showing in a PET scan.

Side effects...well, did you ever walk into a room and forget what you came in for, or go to the store for something specific and come home without it, go on the internet to look something up and totally lose track of what you were there for? Welcome to the world of WBR! Short-term memory loss - not so much loss, as "delay", as someone put it, possible hearing loss...I believe my hearing has improved some since the initial loss, however. I compensate for the memory "delay" by writing down names and numbers immediately, etc..

Its doable, but I think If I had had the choice to have the radiation as a preventative I would wait. If you are doing chemo, ask your doc what chemo you can do that crosses the blood\brain barrier. I take Tarceva (after a prior clinical trial drug let the mets in) which, if it works for you, would be wonderful.

Luck be with you!
stayingcalm

PCI increases cure rate by 5% in Limited SCLC .
Thanks Deb for your input. From the little time I have been a member here I see you are extremely knowledgeable and do your research. I try as well. According to my Medical Oncologist, there was a study done in the mid/late 90's that supported the stats and has not been bettered yet. My Doc was at Duke. Virginia Oncology Associates, part of U.S. Oncology.

I had limited SCLC in my right middle lobe along with 3 lymph nodes, the largest being 5cm. Luckily I was in good physical condition to go thru the regimen.

The study calls for radiation twice a day for 15 days and 4 rounds of 3 day chemo using cisplatin/etoposide the 1st day and etoposide for day 2 and 3. I have had those already and I am in total remission. The next step as part of the treatment is PCI which my rad oncologist will do for 16 days at a slightly lower dose to prevent possible complications in the future.

I have read the study in the New England Journal of Medicine and the stats with and w/o PCI seem to support my doctors statements. So I am leaning toward the PCI so as to increase my chances even slightly.

My rad doc covered some side effects as fatigue, problems multitasking, short term memory loss which you described. Others could be headaches from the brain swelling etc..etc.

They are all recommending it, however I balance me vs. me being a revenue source for U.S. Oncology..lol pretty bad huh when I think like that...but hey..it happens..

In closing as of now I am finished with chemo. My scans on Monday were all clear. None of my doctors mention any chemo that breaks the blood/brain barrier as of yet. No Mets. Most of the time surgery is not an option with SCLC either. With Limited SCLC PCI may increase my chances from 25/30% to 30/35% overall. They say the 5% is significant. I agree. I just did not want dementia setting in due to the treatment. At 54 my docs say highly unlikely now or in the future.

I wish you all the best!

Joe

PS. Do you know anyone diagnosed with SCLC that has been here over 1 to 2 years?

stayingcalm

Chevy4777 said:

PCI increases cure rate by 5% in Limited SCLC .
Thanks Deb for your input. From the little time I have been a member here I see you are extremely knowledgeable and do your research. I try as well. According to my Medical Oncologist, there was a study done in the mid/late 90's that supported the stats and has not been bettered yet. My Doc was at Duke. Virginia Oncology Associates, part of U.S. Oncology.

I had limited SCLC in my right middle lobe along with 3 lymph nodes, the largest being 5cm. Luckily I was in good physical condition to go thru the regimen.

The study calls for radiation twice a day for 15 days and 4 rounds of 3 day chemo using cisplatin/etoposide the 1st day and etoposide for day 2 and 3. I have had those already and I am in total remission. The next step as part of the treatment is PCI which my rad oncologist will do for 16 days at a slightly lower dose to prevent possible complications in the future.

I have read the study in the New England Journal of Medicine and the stats with and w/o PCI seem to support my doctors statements. So I am leaning toward the PCI so as to increase my chances even slightly.

My rad doc covered some side effects as fatigue, problems multitasking, short term memory loss which you described. Others could be headaches from the brain swelling etc..etc.

They are all recommending it, however I balance me vs. me being a revenue source for U.S. Oncology..lol pretty bad huh when I think like that...but hey..it happens..

In closing as of now I am finished with chemo. My scans on Monday were all clear. None of my doctors mention any chemo that breaks the blood/brain barrier as of yet. No Mets. Most of the time surgery is not an option with SCLC either. With Limited SCLC PCI may increase my chances from 25/30% to 30/35% overall. They say the 5% is significant. I agree. I just did not want dementia setting in due to the treatment. At 54 my docs say highly unlikely now or in the future.

I wish you all the best!

Joe

PS. Do you know anyone diagnosed with SCLC that has been here over 1 to 2 years?

SCLC
Well, there's cobra1122 and medi_2, and I also highly recommend you read soccerfreaks' page. Good luck, Joe.

Stayingcalm

Chevy4777

stayingcalm said:

SCLC
Well, there's cobra1122 and medi_2, and I also highly recommend you read soccerfreaks' page. Good luck, Joe.

Stayingcalm

Thanks Stayingcalm.
Good
Thanks Stayingcalm.

Good Luck to you as well.

Joe

hope0310

Chevy4777 said:

Thanks Stayingcalm.
Good
Thanks Stayingcalm.

Good Luck to you as well.

Joe

I guess like everything,
I guess like everything, everyone reacts differently. Mom was dx March 1st with SCLC with mets to the brain (20) We started treatment with WBR due to the amount of tumors plus they wanted to knock that part out first due to neurological issues that it was creating. (she had slurred speach and balance issues, that is why we took her to the ER, thought she had a stroke)

Anyway, she had 12 radiation treatments with the last one being March 19th. Honestly, I see more effects NOW, all this time later from that treatment. Short term memory loss, slight confusion, "searching" for words.....I hope in time it eases up some.

She then had 12 rad treatments to spine, because once again, it moved. That could factor in as well I guess, since that is more or less part of central nervous system.

The good thing at this point is that all of her cancers are in remission, although she is still unable to walk well, she is getting inpatient PT to regain strength and balance.

So, I guess I just rambled her, but I do not know if I personally would get it for preventative measures only.

My best to you and your decision.

stayingcalm

hope0310 said:

I guess like everything,
I guess like everything, everyone reacts differently. Mom was dx March 1st with SCLC with mets to the brain (20) We started treatment with WBR due to the amount of tumors plus they wanted to knock that part out first due to neurological issues that it was creating. (she had slurred speach and balance issues, that is why we took her to the ER, thought she had a stroke)

Anyway, she had 12 radiation treatments with the last one being March 19th. Honestly, I see more effects NOW, all this time later from that treatment. Short term memory loss, slight confusion, "searching" for words.....I hope in time it eases up some.

She then had 12 rad treatments to spine, because once again, it moved. That could factor in as well I guess, since that is more or less part of central nervous system.

The good thing at this point is that all of her cancers are in remission, although she is still unable to walk well, she is getting inpatient PT to regain strength and balance.

So, I guess I just rambled her, but I do not know if I personally would get it for preventative measures only.

My best to you and your decision.

Onset of side effects
Hi, Hope -
I guess I wasn't clear about it, but it was a few months after radiation before I really started noticing the side effects from it - they do take a while to show up. And now it does seem that some of the fog is lifting, so there's plenty of room for hope
stayingcalm

Chevy4777

stayingcalm said:

Onset of side effects
Hi, Hope -
I guess I wasn't clear about it, but it was a few months after radiation before I really started noticing the side effects from it - they do take a while to show up. And now it does seem that some of the fog is lifting, so there's plenty of room for hope
stayingcalm

Thanks Hope & Stayingcalm
Sounds like it will take a few months to develop side effects. I guess it may depend on the dose as well. Do not know if there are different rad doses associated with WBR after mets develop vs. PCI as a PREvent. A good question for my radiation oncologist !

I wish your mom all the best Hope and you as well Scalm.

Be prayin for you all,

Joe