LungLoveLink

Linking you to resources and support in the lung cancer community!

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

Views: 1758

Reply to This

Replies to This Discussion

Caring,
We will be sure to include that information in our publication. There are strategies that can help, which are similar to those used by people who notice cognitive changes, such as things like memory loss, trouble concentrating, disorganized thinking after chemotherapy, something that is often referred to as "chemobrain."

I am glad that your sister is not noticing memory loss as of yet. Some of our volunteers say they really didn't have that side effect from PCI and I hope your sister is one of them. For those who aren't so fortunate, hopefully our guide will help.

Maureen
As usual Maureen always on top of everything!
Chemo alone can give you those brain symptoms. Its called chemo brain. As far as radiation I'm pretty sure it does but I 'm not positive.
Caregiver 2010,

Great idea! I don't think the chest radiation info will go into this particular publication but a coping with chest radiation is definitely on our list of publications to create! We look forward to getting your input on that one when the time comes.
Glad to hear the lung cancer alliance is continuing albiet on a new website. I was diagnosed with SCLC December 2008. After compelting thoracic radiation and chemo my scans were clean so I proceeded to PCI. Research, discussions with other survivors who had PCI and discussions with the medical community convinced me PCI would significantly increase my survival odds.

Biggest side effects were fatigue, headaches and hearing problems. Had 15 sessions of PCI lost all of my hair and found people are too kind. Many told me my head looked great bald. Looking back they were lying. My wife did comment that one disadvantage of my hair coimg back was her affair with the bald headed guy had to end.

No matter the side effects I have clean scans today 16 months later and get to enjoy my wife, my children and my 8 wonderful grandchildren. Anytime I have an ache I try to rember to focus on today and how fortunate I am to have made this much progress against this awful disease.
Cecil
my dad did pci in oct. 08. though his side effects were minimal, these are the remedies we used. For the redness/burning on his head we used "aquaphor", purchased over the counter at local pharmacy, and it worked very well reducing the redness, itching etc. Appetite loss and some fatigue seemed to wear away on its own. In addition, dad did not experience a great deal of memory loss, but maybe "lose his train of thought" at times, though not often. The next and final symptom is debatable: my dad was not as surefooted as he used to be.....the radiation doc said being "off balance" NOT a side effect. The lead oncologist, when questioned kind of rolled his eyes and said he sees it all the time! My dad has since passed, but i do think that the pci kept the cancer from attacking his brain.
My sister hasd PCI after chemo in Aug 07. Her side efects were fatigue,decreased appitite and hair loss. They were only monor and she was still active through out the treatment, I think it was 15 times. Only problem was it didn't stop the brain tumors FOREVER. She had 3 tumors occur in 7/09. She was treated with cyberknife in july and aug.
Reoccured in sept again cyber knife treatment, but never able to treat all as they didn't respond completely. Sadly she passed away on 10.132.09 2 yrs and 9 months after dx with limited small cell cancer. She had just turned 47 years old.
I don't know what to think the PCI and chest RX. limited her doses of cyberknife so if she had not had them would she still be here?? because I have heard/ read nothing but great response from cyberknife. Did the PCI work for just 2 years?? The cancer was no where else but in her brain when 3 tumors were found in july, 09. Towards the last few days of her life she loved her head being rubbed , I think they were exploding in her brain and rapidly growing bigger and bigger,................ I don't believe PCI is as good as they lead you to believe it is. And because it is "standard of care" the Drs recommend getting. I'm unsure as to weather it is the "best" and maybe cyberknife should be the "standard of Care" Only time and research will tell........
Thank you Maureen. This is very important because I understand the more serious effects are not immediate. Yet unfortunately there is scant documentation. Studies indicate that the results are affected by variables such as : age, total dosage, the fractionation, time gap between last chemo and PCI, complete or partial response to chemo, etc. My husband, Rene, had PCI after his chemo/rad. He has lots of neuropathy issues. During PCI, he had L'Hermitte syndrome where -if he nods his head - electrical currents would run down his feet. just on his feet! (the top, not the sole). The radiation onco gave him steroids during PCI so the currents left.

Its hard to distinguish which causes what. the neurologist blames radiation as the cause of the nerve pain in the left lung although it was the right lung that had radiation. Rad Onco said L'Hermitte syndrome was due to the PCI but the med onco was kinda evasive giving a puzzled look like this is a first in his career that neuropathy results from tx. (ah what's with doctors? so afraid to talk straight about side effects?)

After the chemo/ radiation then PCI the side effects were - short term memory is bad, moody, concentration bad, up to now he easily tires. 30 mins task (like computer) or 1 trip to the clinic - then he needs to rest.

Rene's first neuro doctor just gave us a free sample of Lyrica. Rene developed blurry vision!! so I stopped Lyrica and changed his neuro doctor.

now, even with Neurontin, he still has the cramps and tingling sensation in his hands and feet. From time to time, there would still be shooting pain in the inside of his arms or thighs or legs. He still is sensitive to hot/cold. Wears a thick jacket always.

most significant effect was the pain he had at the ER when he needed a CT scan. after the blood draws and IV, there was no good vein for the CT contrast. They attempted - twice unsuccessful- a central line access below his collar bone. He kept screaming his left lung area was very very painful. The ER doctor and later the neurologist said this pain was due to nerve damage inside. This was left lung so it could not have been the radiation of the right lung. I fear this sensitivity also affects inside nerves.

I too await new developments on SCLC treatment.
I was diagnoses with SSLC-extensive, almost 3years ago. Had Chemo from June to Nov. Had an excellent reponse. Was offered chest radiation, I requested that prophlactic brain radiation follow that... I was neither encouraged nor discouraged about that. I was told that if I had no evidence of CA at that point it could be discussed again. I had my chest radiated The end of Dec-mid January. Retesting/scans in April showed no evidence of CA. I then opted to have my brain radiated, looking to KILL the remaining critters. My doc told me of probable memory problems, concentration difficulties.... He stated that my peers would catch up with my deficits in 3-5 years. The only problem that developed was a hypothyroid problem. My radiation doc, took credit for that...
I felt it was more than a fair trade!!!! I am adjusting on medication and feeling better all the time! Considering that the statistics said that I would be dead in 3 months without therapy and that I had a year with therapy.... I am coming up on 3years since Dx and have no evidence of disease.... Sounds like a fair trade to me
slight memory loss (a great excuse for a lot of things) and a treatable thyroid problem. Good Luck!
Harriet,
Great story, it is people like you that give the rest of us hope. I expect to be following in your footsteps.
Cecil
Thank you for sharing your story. My dad (who is 77) just got diagnosed this week with SCLC. We dont yet know how extensive it is. We will find out tomorrow. YOu didn't say but might I ask how old you are and if you supplmented your treatment with any other kind of treatment (alternative types of things?). I'm just curious. It's wonderful to hear your story. It gives me hope.
Cathy
Thanks to everyone who has responded to this request! We really appreciate hearing your stories, what you or your loved ones encountered, and how you coped! I'm going to leave this up awhile longer in hopes we will get more responses. You are all great for helping.

Maureen

RSS

© 2014   Created by AmyLCA.

Badges  |  Report an Issue  |  Terms of Service