Preventative brain radiation, anyone?

[Beachmama]

Hi, I have another question for anyone who knows. My mom is going to have preventative brain radiation, and she is worried about it. Has anyone here had it and what should we expect? If you had it can you tell me exactly how many days you had also.

My mom is worried that she'll lose memories and basic brain memory in general. (The onc told her that, but the radiation doctor hasn't said anything about it yet.)

And a quick update on mom. She is scheduled for her 4th round of carbo/epis after Christmas and the doctor increased the dose just like we were worried she would do. I swear, they treat her like a lab rat they are experimenting on. But, otherwise she is doing fabulously and we truely cannot complain. I will try to upload a pic soon of all of us. We managed to get a family photo done yesterday.

Thanks, Connie

[laban]

My husband had PCI for 17 treatments after his initial chemo of carboplatin and etoposide for LD-SCLC. He lost his hair and has had very minimal short term memory loss. It's been over one year since he's had that treatment and has never regretted the decision to have it. He did have some minor fatigue, but overall the treatment was well worth the outcome, which is no brain mets to date.

[mamasbabygirl]

I wish that my mom's Dr. would have offered us ths option early in her treatment. I hope that it works for your mom-it is called PCI.

[dr_lindac]

Hiya -

My mom had 10 brain radiation treatments about 6 weeks ago. She had some fatigue (which is gone now), some more hair loss, a little foggy memory for a short time, and a short-term hearing decrease in her left ear (now back to normal). Nothing life-changing or too bad at all.

Linda

[Don M]

I have read that PCI is not as intense at treating for actual known mets. I am sure Dr. West has written about it at one time or another.

Don M

[karenlaureti]

My Dad had PCI with minimal side effects. I would absolutely recommend it.

[JB]

Col had 15 consecutive days of brain radiation as a follow up after her tumor removal. She had hair loss and the normal fatigue, but nothing out of the ordinary. Some fogginess with memory, which cleared up some. It would be hard for us to blame radiation alone for some of her issues like "chemo brain" cause she's had so much going on. Best of luck.

[nyka69]

My husband was never a candidate for PCI because he never acheived remission, but I wish it had been an option. The side effects from PCI seem to be preferable to what could occur without it, in my humble opinion.

Best wishes to you and your mom.

[Wendy]

I have 2 members in my local in person support group that had pci. Both had sclc and one was limited and one was extensive.

I am happy to say that both are long term survivors of 7 and 8 years!

Wendy

[dscherer]

My mom had 15 pci treatments this past July. SHe had the same symptoms as everyone here. Nothing to bad at all. I know it was the right decision for her.

Prayers,

Dana

[Beachmama]

Mom saw the radiation doc today and he wants to do 20 days of PCI. I thought that was alot, but he said it was a low dose. (I was not there).

What does that mean, a low dose? I am very uneasy with this. I keep reading about memory loss and vertigo and lots of other permanent damage this can cause. I am so confused and feel so completely uneducated and vulnerable. My mom is like their lab rat. No one can know what will happen in these situations, and it bugs me when they try to tell me what will happen and what to expect. They really just guess.

Does anyone have any words of wisdom for me? I tried re-reading all these posts for encouragement. It helps some. I really don't need my mom being even more forgetful than she already is. UG! SO Frustrating!!!!!

[lc46]

Hi-my Mom had to get whole brain radiation because they found a small brain met in May 8 months after first DX. It is a good thing they are offering the PCI for your Mom. My Mom had no major side effects-maybe a little forgetfullness here and there but that's all. Lost her hair again for a good 6 months before it just started growing back again.

That's about it.

Here is an article that might put your mind @ ease

Retrospective studies have shown that long-term survivors of SCLC (>2 years from the start of treatment) have a high incidence of central nervous system impairment.[23-25] Prospective studies have shown that patients treated with PCI do not have significantly worse neuropsychological function than patients not treated.[22] In addition, the majority of patients with small cell lung cancer have neuropsychological abnormalities present before the start of cranial irradiation and have no detectable decline in their neurological status for as long as 2 years after the start of their cranial irradiation.[26] Patients treated for SCLC continue to have declining neuropsychologic function after 2 years from the start of treatment.[23-25] Additional neuropsychologic testing of patients beyond 2 years from the start of treatment will be needed before concluding that PCI does not contribute to the decline in intellectual function.

[lc46]

Here's another

ScienceDaily (Aug. 21, 2007) — Prophylactic cranial irradiation after chemotherapy significantly reduces the risk of brain metastasis and doubles one-year survival in small-cell lung cancer (SCLC), according to the results of the multicenter phase III randomized EORTC trial 08993-22993, published in the New England Journal of Medicine August 16.

Prophylactic cranial irradiation significantly reduces the risk of symptomatic brain metastases and significantly prolongs survival" according to Prof Slotman. "As this treatment is well tolerated and does not adversely influence quality of life, prophylactic cranial irradiation should now routinely be offered to all SCLC patients with extensive disease whose cancer responds to chemotherapy

[Beachmama]

Hey slobberdog68, I am really sorry about your mom. That is just lousy timing. I hope you cam find peace this New Year.

Thank you for the articles. I did read the same info and I know what it says. I think it's a good thing overall. I just wonder what the reports AREN't telling us about brain radiation. I just can't help but think the worst. I'm a bit of a skeptic in this way. My mom seems okay with the decision. I just thought 20 days is alot.

2 more months and this all should be over with and hopefully we won't have to deal with it again. EVER. That's my hope. I hope it's a small price to pay to be cancer-free. I'll keep in touch. Thanks again.

[LolasDaughter]

Hi Connie,

My mom, too, has SCLC (with NSCLC too, but that's a whole other story!) and appears to be on a similar treatment plan to your mom. You can read below in my signature.

When I took her to chemo last week, her onc gave her the fyi on PCI. Mom was surprised as this was the first she'd heard of it (I'd read about it on this board and had discussed the possibility with my Dad. We've learned Mom is more of a 'tell me on a need-to-know basis' type of patient, so we hadn't discussed it). Anyhow, she will find out more tomorrow but has been told she'll receive 3 weeks of PCI (15 sessions - close to your mom's 20). My understanding of 'low dose' is not the frequency but the strength of the radiation. If there are already mets present they are working to irradicate, I believe the 'dose' of the radiation per each treatment is much higher.

I understand your feeling of your Mom being a lab rat, but let me share a different word picture, if I might. Mom identifies each level of treatment as 'God's Army'. It was hard for her to realize the onc nurses wear protective garb when hanging the chemo because it's toxic, but those toxins are GOD's ARMY against the CANCER. And she feels the same about the radiation, and the PCI and whatever else may come. That's mom's way (and mine) of embracing the treatment for this disease that can seem downright archaic at times.

Anyhow, on a lighter note, if you've read some of my previous posts you'll see Mom tries to bring a bit of 'light' to what can be a dark world of cancer. So when the onc told her she would be having 'prophylactic brain radiation' she called my Dad later in the day and told him 'they want to put a condom on my brain!'.

Hugs and prayers to you and your mom in this fight. I know what it feels like to be the daughter of an LC patient and researching every step of her treatment. Your mom is so blessed to have you.

Love,

Nicole

[Ghita419]

Dear Connie,

From what the docs told my husband (LD SCLC), it definately will make a big difference in his outcome. So, we elected to have it. He finished his PCI On December 3, 2007. He experienced severe fatigue following his PCI, to the point of where he was so tired he was making some very poor decisions.

He filled his diesel truck (which he's had for a bazillion years) with 60 gallons of gasoline. On the bright side of that incident, I did get to ride in my first tow truck. He's always been a really good capenter, but after his PCI we decided to add a coat closet to our frontroom. He made mistake after mistake on it, to the point of where he's putting it up now for the 3rd time.

I was unsure of, where do the effects of PCI leave off and become, "Maybe this is something else?" so we bumped up his Dr. appointment and saw the doc yesterday. I was thinking hyponatremia (low sodium) which can cause the same symptoms.

Well all the lab came back WNL and the doc assured us that this is from the PCI and maybe a little chemo brain. He said it would get better over time.

I presented this question to the message board here and got the very same answer. One person wrote nd said it took her husband 6 months to get his head screwed on straight.

Don't fear PCI complications. As my husband has learned, you need to measure twice and cut once. He's learning to take his time making decisions and it really is getting better. Now that he looks back, he was sleeping almost all day, every day in the beginning, where now he's down to one short nap a day.

I really don't think the PCI affected his judgement. I think he was so tired, he couldn't think straight.

Get the PCI...the outcome is enough better that it's definately worth the fatigue that follows for a short time during and after the treatment.

When and if the severe fatigue develops, it can be dealt with as my husband is getting better a little bit, every single day. When I presented this question to the board here, I had many responses, one of which said "It took my husband 6 months to "Come out of the fog".

We're looking at it as a minor complication, as there are much worse complications of other treatments like severe N/V, pain, etc.

Go for it!!!!

Ghita

[Ghita419]

Connie,

I forgot to mention what our doc tol us about PCI. He said, "SCLC has an affinity for the brain and since chemo cannot cross the blood brain barrier, it won't do anything for the cancer cells up there." When my husband's brain MRI came back negative just prior to the PCI beginning and I again questioned PCI as you are doing. He assured me, that SCLC has such an affinity for the brain that, "Yes, it's there, as micrometasesis, many small mets that have not yet formed a tumor, but will. Those are the cells that have to be knocked out.

As I said before, go for it, the studies show a much better outcome.

Ghita

[Beachmama]

Thanks everyone, you are all such an inspiration and a light in such a dark time.

Nicole, I am LMAO at the "condom on the brain" statement. That is GOOD! What a comedian your mom is!!!

Tell her to write a book. I'll buy it.

Connie

[Bev'sSister]

My sister had the PCI done and really did not have any major problems. She did have headaches and was tired, but basically that was it.

As far as brain function goes, she did not have any issues with that. I can remember calling her on the phone and when she answered she said "goodbye" but laughed because she knew it would freak me out. She kept her sense of humor throughout everything.

Good Luck!

Bobby

[Ghita419]

From what our radiation oncologist said about the number of treatments (10 treatments vs more), they use the same amount of total G's for the treaments, but some docs increase the number of treatments and reduce the G's per treatment to achieve the same total G's. In this way the patient has fewer effects but has the same outcome because they receive the same total G's.

Ghita

[ztweb]

I know this is way late, but I wanted to add my two cents here. My dad had PCI and we are forever thankful that he did. I guess we wanted to look at it that we did EVERYTHING in our power. Dad responded well to it, and so far...2 years later, we are still in remission!

With the PCI, dad lost his hair in a bad way, and it took a LONG time to grow back. I would venture to say it wasn't "normal" again for more than 6 months maybe. His eyebrows are still weird...they are like wire! Oh well...small price to pay.

I do know that as a family this was our most difficult decision. We were afraid of the long term affects. We decided as a family and have never regretted it. Dad does forget some things, but I don't so far see anything too major with memory loss and such.

Stay strong and pray!

Blessings,

Jen

[Don]

I think that you should go to a web site www.irsa.org and learn about all of the different options you have before making a decision. This is a great web site that fully explains options, side effects, and new treatments. PCI and WBR are not the only answers.

God Bless

Don

[Susannah]

My husband just finished with PCI three weeks ago.  On the final treatment (of 10 total), he had a near-syncopal spell.  They decided to keep him in the hospital for observation.  It turned out that he had BPPV (positional vertigo), which he had had one time many years ago.  After the Canalith maneuver, he felt better.  Now he is very fatigued and can sleep almost all day and night.  I'm hoping that will all pass.  The oncologist told us that with PCI, the hair will be gone permanently.  This doesn't really bother him, if it means additional years to his life.  He still has a bit of dizziness and queasiness, but seems to be getting each day.  It is good to hear all the info above and that hopefully we will all come out of this okay.  Thanks for posting!

Best to you all,

Sue