jcawork Posted August 28, 2004 Share Posted August 28, 2004 The great debate. Please let me know if you did PCI, how many treatments and any side effects you experienced. Please also let me know if you chose not to and if willing to share, why you chose not to. Thanks, Jen Quote Link to comment Share on other sites More sharing options...
Rachel Posted August 28, 2004 Share Posted August 28, 2004 Hi Jen, Well, as I have said before I was going to do PCI as I wanted every treatment that could help me. I developed Brain Mets prior to PCI so did WBR. I don't know how similar they are, but I do have short term memory loss that my friends say they have also except I have a really good excuse.lol My opinion is give em all you can. But in the long run it is only your choice to make. Good luck & take care...Rachel Quote Link to comment Share on other sites More sharing options...
twodogs Posted August 31, 2004 Share Posted August 31, 2004 I did. It was 15 rounds. Five zaps a week for three weeks. Last one on December 19, 2003. First, most obvious, affect was my white hair, ( I started graying at 21), started going away real fast during week 2. By January 1st I was cue ball bald. I started to notice some additional difficulty with memory tasks along about then also. I say additional because I was already dealing with Chemo-Brain. By February 29, my birthday, I had a head full of stubble about like a three day beard. Today my hair has come back strong and is the same color as when I was in my youth. I still struggle with memory tasks and have the same chronic fatigue symptoms so many of us endure. My most recent tests show no evidence of disease. I have a lot of faith in my doctors and their staff people. They jumped on me instantly as soon as I was diagnosed and treated me more like a close friend or relative than an obscure "patient". As ugly and miserable as this whole process is, at this point, I'd do it again. Not everyone feels the same about things and your mileage may vary. Quote Link to comment Share on other sites More sharing options...
Remembering Dave Posted August 31, 2004 Share Posted August 31, 2004 I did PCI, I never once doubted that I would get it if it was offered to me and am convinced that my recent reoccurance would have been in my bain instead of in my skull bone if I had not have had the PCI. As far as the side effects, I did have a poblem with severe fatigue, more so than with chemo and radiation at the same time. The fist day I had a pretty bad headache which was caused by a slight swelling of the brain. I got on steroids and immediately stopped having the headaches. I was keeping my head shaved so did not notice any additional hair loss but I understand that happens. As far as the short term memeory loss goes I don't think I had much of a problem with that. I seem to have shot term memory loss a lot if you talk to my wife but seriously I did not notice much more loss than I normaly had. To me, any chance of living one moe day with my wife and daughter is woth any temporary side effects which may happena and chances are I will not get any of the permanent side effects. David C Quote Link to comment Share on other sites More sharing options...
bengel Posted August 31, 2004 Share Posted August 31, 2004 Jen, I had 15 days of PCI after chemo, lung radiation and a right middle lobectomy. My oncologist and radiology oncologist were in total agreement. The brain is a "sanctuary" for cancer cells and there was no question according to them that I should have it done. I had similar side affects as twodogs, but my hair goes in every direction, some are curly and some are straight, so I just keep it short as in my picture. That's the way I wore it when I was playing ball and before I married my college sweetheart. Of coarse I had to change alot of other things after I got married and am still learning after 38 years. Twodogs: I whistled real loud as we drove past your place driving to and from Rapid City on I-90 when we visited our kids in Gillette. Jen, I have excellent doctors so our agreement from the very first dx was that I was willing to go to the wall to conquer this beast. After 3 years of being "clean" I'm glad I did. Bud Quote Link to comment Share on other sites More sharing options...
Nancy B Posted August 31, 2004 Share Posted August 31, 2004 Hi Jen, I have my last cycle of chemo next week and then will have a brain MRI. If all is clear they will do PCI, if not, then WBR. My oncologist told me that so many times they get the lungs all cleared up and then, BOOM, it's in the brain. I am definately not looking forward to it but will do it. I am really having a problem with fatigue (there has got to be a stronger word) with the chemo and have been told that it is worse with PCI. Let me know what you decide. Take care. Hugs and prayers, Nancy B Quote Link to comment Share on other sites More sharing options...
Elaine Posted August 31, 2004 Share Posted August 31, 2004 Jen I don't have anything to add because I don't know about PCI. I just want you to know that you remain in my thoughts. It was good to hear from you. love and fortitude elaine Quote Link to comment Share on other sites More sharing options...
kitkathi Posted September 1, 2004 Share Posted September 1, 2004 Hi Jen, My dad had PCI done. His main complaint was extreme fatigue. He didn't hesitate having PCI done because he knew that many people who have SCLC do not have that option. His fatigue lasted quite awhile but he is doing much much better (PCI Jan/Feb 04) He told me that he occassionally has a problem remembering a word for something. It is like when you have a word on the "tip of your tongue". He said he eventually comes up with the word it just takes him longer sometimes. But you know Jen, everyone reacts to treatment differently. You just have to calculate the risks and decide if it is worth it. I think that you are very wise in that you are finding out as much information as possible. After all, you are the Commander of your own ship (okay...slightly dorky analogy...well very dorky but...) Good luck to you. I can understand your concern because I know you have suffered a lot of side effects from your treatments. Hang in there. It has been a year since my dads diagnosis and his scans show NED. Kitkathi Quote Link to comment Share on other sites More sharing options...
jcawork Posted September 1, 2004 Author Share Posted September 1, 2004 I am surprised more people didn't give feedback on this topic. Thanks to those of you who did. Jen Quote Link to comment Share on other sites More sharing options...
Elaine Posted September 1, 2004 Share Posted September 1, 2004 Jen Do a search of the site. There have been many, many posts on the pros and cons of PCI. Or look through the SCLC forum--I think some of them are there. Maybe it's been a slow week or maybe people have already written their experiences. I am sure no one meant it as a slight on you. Love to you. elaine Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted September 7, 2004 Share Posted September 7, 2004 Hi Jen, Sorry for the late reply. My mom, 83, is most likely not opting for PCI. Both her onc. and radiologist are not encouraging her due to her age. This obviously does not apply to you. From what I have heard, after 65, side effects are more pronounced and severe. At 83 my mom has decided her ability to be independent outweighs the risks. While I would love her to do everything to prevents mets, I have learned to respect her decision to live her life to the fullest. The doctors clearly told us if she wanted the treatment they would provide it, but were very candid with the potential side effects- wishing you all the best in your decision process!!! Love, Nancy Quote Link to comment Share on other sites More sharing options...
SharKats Posted September 24, 2004 Share Posted September 24, 2004 Just passing along what my 2nd opinion onc told me. (He's the current acting chief of oncology of Baylor College of Medicine at the Medical Center in Houston). He said if it were him he would NOT do it and he did not recommend it for me. Since I have smlc and started out with superior vena cava and a huge tumor blocking my right airway, he feels when/if the cancer returned it will be tumor regrowth in my lung. He told me he did not feel the risks were worth the reward. He is highly respected and one of the onc's at my Cancer Center had him for a professor and she thinks he is absolutely wonderful. So.......... Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted September 24, 2004 Share Posted September 24, 2004 Shar, it sounds like your case is a little different though because from reading your profile it sounds like you were staged with extensive sclc (with liver involvement). Jen's profile sounds like she is thought to be limited stage. The benefit of PCI in terms of improving survival has really been shown only in limited stage, not extensive stage. Quote Link to comment Share on other sites More sharing options...
SharKats Posted September 25, 2004 Share Posted September 25, 2004 You're right!! I had forgotten about that!! Thank you so much for the reminder; I hate to post innacurate or non-applicable info. Quote Link to comment Share on other sites More sharing options...
Laurie Posted September 30, 2004 Share Posted September 30, 2004 Hi and sorry for the late response. My Mom had PCI and was fine except she was tired and did lose her hair which grew back. Her doctor from Dana Farber/Beth Israel in Boston said absolutely to do PCI because the chemo doesn't penetrate the brain lining and radiation will kill any tiny cells that may have gotten up there that are undetectible. I think you have to be aggressive with this.. as long as you don't have the medical problems such as history of stroke etc.. that they ask you about prior to getting it. But you have to do what you feel comfortable with. I'm praying for you and know you will make the best decision for your body. Hope this helps. Hugs to you! Laurie Quote Link to comment Share on other sites More sharing options...
Andrewsmom Posted October 4, 2004 Share Posted October 4, 2004 I would definitely have the PCI. I had it for 5 weeks and my hair is definitely thinner than it was before treatment (it fell out 3 times!) and sometimes the right words don't come quite a quickly but every single medical oncologist and radiation oncologist with whom I consulted said it was an absolute. My medical oncologist said he has only had 1 patient that had the cancer show up in the brain after having pci and he was surprised at that. It is well worth the risk. Rebecca Quote Link to comment Share on other sites More sharing options...
Andrewsmom Posted October 4, 2004 Share Posted October 4, 2004 Ooops- meant 3 weeks not 5 weeks of pci. Rebecca Quote Link to comment Share on other sites More sharing options...
Cindy RN Posted October 4, 2004 Share Posted October 4, 2004 Jen-I think I told you before I opted not to have it done. Several reasons but the main one was I wanted to return to work (which I am!!!) and I did not want the memory loss problem. I always figured if it spread there we would do it then. Just my humble opinion. Cindy Quote Link to comment Share on other sites More sharing options...
Don Posted October 13, 2004 Share Posted October 13, 2004 I was considered extensive with superior vena cava. Inside both lungs, outside both lungs, bleeding out the nose and and looked like a balloon. My onc said lets see if we can clean up lungs first then we will watch the brain. Well after a few months I had a very large tumor show up in the brain and rad doc sent me to brain doc who said why do whole brain rad when we can do gamma knife and really smack that tumor. I said cool go for it and today that brain tumor doesnt even show up just empy space LOL. His opinion is if you dont have it dont do it and see how or what new procedures come up since it is almost a daily thing. Also like he said let us save frying the brain till a later date when you might really need it. I kinda joke as I write this but I try to look at the brighter side of things. May God Bless You and keep the faith. Went to Denny's for breakfast 1 hour after gamma knife. Don Quote Link to comment Share on other sites More sharing options...
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