I am relatively new to this site. I have been reading posting/journal entries for about a month. This is my first with posting. My husband Tom (48 years old) was diagnosed with Limited SCLC end of Jan. 2008. They started chemo/rad. within days. He did 6 weeks of rad. Just finished 5th round of chemo out of 6. Holding up remarkably. Drs. have mentioned the preventive whole brain rad. depending on results of test after chemo is complete. Tom and I have been doing alot of research on PCI. We are very concerned with side effects of it. Read lots about dementia, memory loss, etc. like symptoms that may not surface for up to a year or longer after treatment. He is very scared that quality of life will be compromised. He realizes that the treatment increases long term survival, but is it worth it if quality of life decreases? Would love to get some input from all of you out there.
Thanks,
Jean
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Pros/Cons of PCI
- By jeanxtm
- Posted May 2, 2008 at 7:25 pm · 11 replies
- In Small cell lung cancer
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Explore topics in this discussion:
Cancer Incontinence Dementia Confusion Hydrocephalus Radiation therapy Chemotherapy Memory Depression
11 replies
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- By WendyG
- Posted May 2, 2008 at 8:24 pm
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Hi Jean-
My mom has ED-SCLC, but never had PCI, so I can't relate a personal experience. I will say that after reading postings for over a year from various individuals who have had it, the detrimental effects for someone as young as your husband are very limited. When they give PCI it is usually a total of 36 GY, given at 2-3 Gy's per session. It is considered being pro-active, and to me, worth the shot of eliminating any floater cancer cells that may have made it through the brain blood barrier, where the chemo does not go. Although, there has been some controversy lately about whether or not chemo in fact does reach the brain. I have also read of some cases where people develop brain mets even after receiving PCI. But, with PCI, I think what is trying to be accomplished is something of an initial best shot at containing the cancer blow the neck.
You might want to try Onctalk.com where Dr. West (oncologist) has written posts regarding PCI and if you have further questions or concerns after reading his posts, you can ask them in the forum and he is terrific at answering promptly.
I know I wasn't that much help, but I hope this gives you a start. Radiation to the brain is a pretty scary thought, but quite a few have had it, it's not new. I am sure there are others here who will give you their personal experiences and offer their thought processes in having it done..prayers for you and your husband. I am glad you joined in the discussions, welcome though I am sorry you need this forum...
Wendy
- By jeanxtm
- Posted May 2, 2008 at 10:20 pm
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Wendy,
Thanks for your input. I have not read alot on Onctalk.com but Tom has gone through it pretty thoroughly. What he has read is info on people 2-3 years out from PCI. Neither of us have found info on anyone 5 plus years. We know they have to be out there somewhere. Tom is such a practical, needs lots of research, takes his time making decisions kind of person, he needs to make sure he is thinking all of this out (which he should).
Many tough times, tough decisions lie in front of us.
With the grace and guidance of god, family, friends, and others we will endure the journey we are on.
Thank you again.
Jean
- By dbfc
- Posted May 3, 2008 at 5:30 am
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All available evidence suggests that PCI reduces your chances of developing brain metastases, but I guess you know that. What isn't clear is what happens years down the track, and it would be wonderful to be cured so that you had to worry about it. Good attitude!
The problem is that no one can tell what will happen to YOU, only to an average group of people like you. You are in the fortunate position of potentially getting a cure, and I suspect the best way to achieve that is to cop the risk of PCI and have it.
My wife is also 48, with ED-SCLC, and had PCI (which included treatment of a cerebellar met). So far 18+ months later, her brain shows no effects of the radiation. The current second run of chemo. is addling her a bit, but she could knit a complex baby shawl from memory before that started.
Wishing you every success on your journey.
David in Oz
- By barbsdaughter
- Posted May 3, 2008 at 6:20 am
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I believe it is a very difficult personal decision - my mom had sclc went through chemo and radiation and was NED Dec 23, 2007 had MRI on brain - clean was going to start PCI but MRI also showed a large AVM which could have ruptured from PCI then deceded not to dot PCI March 4, 2008, another MRI done- 2 small spots were found in brain- mom passed on March 12, 2008 Im not telling you this to scare you but my feeling is that I would rather have a forgetful mom then no mom at all I wish you so much luck in making your decision it is a very tough one
- By MaryRVF
- Posted May 3, 2008 at 10:50 am
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It is a tough decision. My 74 year old mother was DXed with Limited SCLC in October--she received the usual chemo/ radiation and thankfully scans came back clear. She then had 10 PCI treatments that ended in mid-February. She did well thru all and so far all scans are clear. But...ever since then she has become more confused and seemed to show what we thought were signs of major depression (loss of weight, cut out all activities, naps all day, confusion). A week and a half ago we did all scans again, and thankfully they are still clear, but the CT scan of brain did show possible Normal Pressure Hydrocephalus. She has also shown increasing dementia-type symptoms and some bowel incontinence. We have moved her to a skilled nursing facility for now while we see what's going on.
We are not sure if these are symptoms she would have gotten anyway at her age; or if caused by PCI. I have found a couple articles on PCI possibly causing cerebral toxicity, etc. I feel the PCI has caused or exacerbated this condition; but I can't decide if I regret her getting it done or not. I know if we were told she had brain mets now I may be thinking "Oh, why didn't we get the PCI!" Can't decide if it would just be better to just wait and treat brain mets if and when they appear. Tough decision. Take care, I will be praying for you!
- By jeanxtm
- Posted May 3, 2008 at 10:57 am
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You know for me, as the Wife/Caregiver, it is a easy decision to make....do whatever it takes to keep living even if it is only for alittle bit or for a longtime, because I don't want to be without Tom no matter what he will be like. Even though I know I will help make the decision, ultimately the decision is his to make. Lets just hope he makes the right one!!!
- By gpawelski
- Posted May 3, 2008 at 11:32 am
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SCLC is intrinsically sensitive to chemotherapy (NSCLC is not). SCLC is one of the very few forms of carcinoma for which chemotherapy has some positive effect on survival. You'd think that if it is so sensitive to chemotherapy then why PCI? Well, SCLC is also very aggressive, tends to metastasize readily and grow rapidly. Median survival is on the order of 9-10 months, rare patients have long-term remissions (years).
Recurrences are much more difficult to treat. Brain metastases are common, hence the use of prophylactic whole brain radiation (PCI). PCI comes in safer doses with fewer side effects, but when to use it is controversial. Patients who are candidates for whole brain radiation are selected because they are thought to have limited survival times of less than 1-2 years, before the effects of radiation necrosis would show up.
Several studies in the '90's convincingly showed there was no survival benefit or prolonged independence in patients who received whole brain radiation therapy. The efficacy of this kind of radiotherapy has not been established. The most interesting part of the studies were the patients who lived the longest. Patients in the observation group who avoided whole brain radiation had an improvement in survival.
Large-molecule drugs do not cross the blood-brain barrier (BBB), their concentration in the central nervous system (CNS) is very low. The concentration of radiolabeled large-molecule drugs in the CNS is found to be significantly lower than in other organs, and thus undetectable in the brain, in the spinal cord or in any other site of the CNS. If they do not penetrate well into the CNS, it may represent a tumor 'sanctuary' site for these regimens.
It makes me wonder, if they radiate just the whole brain but not the spinal cord, how does PCI benefit the patient? Any theoretical cancer cells in the spinal cord would eventually infiltrate the brain.
The problem of penetration into the CNS is not as nearly as severe for small-molecule drugs. Large molecules cannot permeate through the narrow spaces, however, fat soluble (lipophilic) molecules can dissolve through the capillary cell membranes and are absorbed into the brain. A few brain diseases consistently respond to lipid-soluble small molecules.
- By Kerstin
- Posted May 3, 2008 at 11:46 am
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Hi there, I was dx with Lt.SCLC in MArch of 06 had Chemo, Chest Radiation and 6 weeks after Chemo I had PCI. I did a lot of research, not that it helped my decision a lot. I did PCI, because I figured I would do all I can do to fight this monster. It has been 19 month since I had PCI and the only thing I can say I noticed is that I once in a while tell you something I had told you a week ago. You have to keep active and work your brain. I am glad I did it and would do it all over again, yes it was scary but I am still here, watching my oldest son to go to Prom last night.
God bless you, Love Kerstin
- By StacieK
- Posted May 5, 2008 at 9:20 am
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Hi Jean! My Dad did lung radiation, chemo, then 10 sessions of PCI. He is 69 yrs old and was diag. Feb 2007 and I am so happy to say he is still in remission and has made a comeback. Yes some things are still different: tastes, energy level, strength....but he is so much better than several months ago and we pray he just keeps getting better. We haven't notice any confusion/dementia so far.
The PCI was highly recommended by the docs. I think they wanted to do 15 sessions but my dad was going on a trip so he did 10. (the little picture is us in Atlantic City 6 mths after diagnosis)
Good luck with your decision and stay positive!!!
Stacie
- By jeanxtm
- Posted May 5, 2008 at 10:04 am
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Thanks for all the input everyone. Tom and I took alittle trip this weekend for R & R. Our first getaway since all this started. I am just getting caught up with reading the posts.
Tom goes back and forth on what he wants to do. I know and he does to, that he hasn't even had all the tests done after first round of chemo to see where he is at in all of this. So we maybe jumping the gun, PCI may not even be an option. But we don't want to wait until the last minute to make any decisions.
This has been such a fast paced time for us with diagnosis, treatments, etc. I sent Tom to the dr. January 22 thinking he had a tooth infection that moved into his chest, while I am at my Aunt's Funeral in FLA. By Jan. 31st was told had SCLC and on Feb. 4th 1st cycle of chemo, Feb. 5th radiation started.
WE thank GOD everyday for our primary care dr., she immediately knew it wasn't a tooth infection and sent him for a CT scan and got the ball rolling. But my point is, that we aren't second guessing anyones diagnosis, but wish we had time to speak with other drs. to get other opinions. We are very lucky Tom has had excellent treatment so far, and still feel very comfortable with the line of treatments he has had to date. But we still hope we don't have to make another rush decision again.
Jean
- By summertrace
- Posted May 7, 2008 at 12:41 pm
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if it ain't broke, don't fix it!
good luck,
helena
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