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PCI side effects

LCA is creating a new publication on coping with side effects from prophylactic cranial irradiation, or PCI. We would love to hear from those who had PCI about side effects from the treatment and what kinds of coping methods were used to deal with those side effects.

 

Thanks for taking the time to help future SCLC patients!

 

Maureen

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Permalink Reply by dc on May 1, 2011 at 11:16pm

Hi,

My dad completed chemoRx and radiation in December for limited stage small cell lung cancer.He completed PCI at the end of January. About 3-4 weeks afterwards, he became significantly fatigued, lost his appetite, and most concerning has been having problems with his short term memory. Is this typical? Does the short term memory loss improve or is it more likely to be permanent.

 

Thank you,

Diana

Permalink Reply by RiaRia504 on May 2, 2011 at 6:52am

hi diana:  my dad also did pci, with some short term memory issues, sometimes, it seemed as though he lost his train of thought, though nothing we could not live with.....he started to write lists for himself.  So, this is very typical with the pci.  The fatigue and appetite issues will go away with time, tell your dad to hang in there!!! 

maria

Permalink Reply by MaureenLCA on May 2, 2011 at 5:10pm

Diana,

Great question. We interviewed a prominent radiology oncologist for the new brochure and he said that the fact that the radiation dose used for PCI is less than for radiation that's used to treat brain tumors helps lessen possible side effects. Most are short-term, like concentration and recent memory issues. He also said that, depending on the physical condition of the patient, the fatigue generally gets better within a month. Have you talked with his treatment team about his fatigue? For some, it can be hard to tell if memory issues are from the brain radiation, the effects of chemotherapy ("chemo brain"), or just the normal aging process. As Maria wrote, folks who have lingering memory problems find it helpful to keep lists and to use other ways to help them to remember things. 

 

Maureen

Permalink Reply by bronie2MOD on May 2, 2011 at 8:30pm
Hi all.  Am a SCLC survivor (knock on wood and anything else handy) x 18 years and PCI x 15 sessions.  I must tell you this treatment was the least of my discomfort.  Was 38 y/o at the time of diagnosis and really thought I would die from this terrible, terrible disease.  I welcomed PCI. I did have my hair falling out AGAIN but regained most of it back.  Subsequent to it I eventually finished a Master's and Doctorate in Nursing. I think the only long term side effect I can ascribe to PCI is a mild loss of  balance which I learned (from this web site) sometimes happens.  I am doing exercises to manage and so far it's been helpful.  For whatever it's worth....bronie AKA tonie
Permalink Reply by dc on May 18, 2011 at 8:56pm

An update...my dad was seen by the neurologist and was placed on prednisone and has done remarkably better. His energy and appetite have improved. Most importantly, he has had a dramatic improvement in his cognition on prednisone. He is still not quite as sharp, but overall is more conversant and is back to work. I suspect there is microinflammation of the brain that occurs with PCI.

 

Diana

Permalink Reply by AmyLCA on May 20, 2011 at 10:35am
Glad to hear that he is doing better.
Permalink Reply by Paul on May 4, 2011 at 10:46pm

 I was  diagnosed in 2003 with sclc ( limited stage) did 4 rounds of cisplatin and etoposide in combination with radiation twice a day to my chest for 30 treatments then pci to the brain.

 I have significant hearing loss and neuropathy in my fingers some burning sensations in my feet also have memory loss (chemo brain) have a sleeping disorder which I take ambien for -- I am sensitive to light --Lately I have been getting migraine headaches more often, that is preceeded by visual distortions -still have lots of fatigue  -I'm 58 years old

Permalink Reply by bonnie on May 16, 2011 at 8:53pm
I had PCI last month for 10 days really have not had any side effects except for hair loss maybe being off balance a little bit but other than that everything is great oh and very mild headaches
Permalink Reply by dc on June 20, 2011 at 11:17pm

Hi,

My dad's cancer presented with low sodium (hyponatremia). His sodium normalized with treatment. He has been in remission since December. About 6 weeks ago, his sodium level decreased again and he is back on a fluid restriction. He had a full evaluation at that time and another chest/abdomen/pelvis CT scan today, and still he has no sign of cancer on CT scan. Has this occurred with anyone else? I am concerned that this is a paraneoplastic process. Am also wondering if PCI could lead to low sodium due to SIADH???

 

Thaks,

Diana

Permalink Reply by dc on September 6, 2011 at 7:27pm
My dad who is 75 had had significant hypersomnolence syndrome, difficulty expressing himself, and increased short term memory approximately 2 months after completing PCI (Jan 2011). His neurological symptoms improved significantly with high dose prednisone. He continues to feel fatigued however with increased naps.  Now he has recurrent SIADH without evidence of recurrence. Am wondering if SIADH after PCI has been reported. of course, this could still be a paraneoplastic syndrome before visible recurrence of cancer. Am interested in others thoughts and experiences.
Permalink Reply by bonnie on September 6, 2011 at 10:04pm
I did have chemo brain  but pci I did not have to much trouble with sometimes I do blame it for short term memory I am  so lucky with the chem and rad and pci the most I experienced was fatigue I was diagnosev last Oct with sclc lim so far my 2 ct scans show I am in remission I have another one next monday so I am hoping all is well I feel good most of the time I do get out of breath often and also tired but other than that I am great and thankful for everyone I am with my family I am going to beat this I may be 58 yrs old but I have a lot of fight in me so do the pci it is so much better to be sage than sorry I had no long term side effects please do it you will lose your hair but who cares it grows back let ,me know how you make out god bless
Permalink Reply by bonnie on September 19, 2011 at 9:05pm
have sclc lim had my 3rd ct scan it allright except for my adrenail gland had a 17 cc groweth it was 11 cc I am having a ct scan biopsy on monday I would like to know what to expect with scan never had one of them I am clostrophopic if it is cancer what can they do?? Please help with answers I am so scared

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