wenna Posted November 12, 2003 Share Posted November 12, 2003 I posted this in the "Good News" section as well.. but I wanted you guys to know! As of this date, I am officially in remission!!! I want everyone here to know how much it meant for me to have a place to come to and recieve so much good will and encouragement! Lately I have become a "lurker" but still drew from your answers to others. Now only one more thing to think about.. PCI or not. At the begining, I was saying shoot yeah! a 10% more chance of it not coming back is better than no per cent. But now, after talking with the onc.. I hear side effects such as loss of memory, loss of cognitive skills and more... I am having to second guess that original feeling. I asked him if these were only temporary and he said no. I hardly have any memory left as it is.. does this mean I won't remember my name or my husband's? Cognitive skills? This is about the only thing that I still have! I've read the posts here on pci... but I am still left with... is it worth the 10% versus the quality of life that I need to have left after all is said and done? Any thoughts on this would be welcomed! Quote Link to comment Share on other sites More sharing options...
natalie Posted November 12, 2003 Share Posted November 12, 2003 That is such great news! I am so happy for you! Heck yeah it's worth it (if you ask me)! I have to admit though, I don't know what its like to go through all the side effects so I'm hoping someone who's been through treatment will give you some feedback, but, you could be the 10%, so in my eyes, it's worth it. You go girl!!!! Way to beat this beast! Quote Link to comment Share on other sites More sharing options...
kimd Posted November 12, 2003 Share Posted November 12, 2003 Wenna: What great news!! So glad you're in remission. This is encouraging for the rest of us. I'm sorta new at this and don't know all latest options for treatment, but I would be unsure about the memory loss thing too! Maybe see what others post here. So happy for you and your family! Thanks for making my day! Quote Link to comment Share on other sites More sharing options...
pritchie Posted November 13, 2003 Share Posted November 13, 2003 Wenna, I am so happy for you. Isn't Dr. Schreeder great. My Mom thinks he hung the moon. Pamela Quote Link to comment Share on other sites More sharing options...
wenna Posted November 13, 2003 Author Share Posted November 13, 2003 Thank you all for listening.. We went out to dinner to celebrate.. lol I hope each and everyone on this board will get the great news that I did!! Never give up hope. I kept telling my husband how I thought it was still there and had myself all prepared for the bad news. My husband tho on the other hand kept telling me, he thought it would be good news and not give up so easily. I gave him a big smile when he told me "I told you so". He has never said that to me.. LOL it was good to hear it tho! So NO GIVING UP!!! p.s. Pritchie? you mean he doesn't hang the moon??? I agree with your mom and half of Huntsville does too! LOL Quote Link to comment Share on other sites More sharing options...
bart ziggie ( Greg ) Posted November 13, 2003 Share Posted November 13, 2003 Wenna, Awesome news ! It sounds like to me your treatments were very effective. I also had this desicion to make about the PCI. There are several of us here on the board that were diagnosed limited stage and have went thru this same desicion making process. In my opinion it was worth the try. Some on here have opted to not take PCI and they are doing great as well. I will admit that the side effects were harsher on me than i expected. Long term neurological side effects are pretty well unknown of. Whatever choice you make it will be the right one for you. It sounds like you have a good Dr. What caught my eye in particular is your profile info. You indicate you have had a CT scan and a PET scan and are awaiting the results. In my opinion a PET scan is being perfectly utilized here by your Dr. When i was declared cancer free by my Dr. In 8/2003 it was based on a CT scan only. My point being here is we that are diagnosed limited stage have got to have PET scans. To me a CT scan of original tumor sight is not an indication of being cancer free. Well at any rate Jump for joy Wenna you are on the right track. Sounds like you have good Drs. and a good attitude. Keep close to the board here and keep posting good news. Regards Greg Quote Link to comment Share on other sites More sharing options...
wenna Posted November 13, 2003 Author Share Posted November 13, 2003 Thanks Greg for your answer! I should have told you why I'm so worried about the side effects. I also have epilepsy. Over the years of taking first one drug and then another.. some very harsh ones at that.. I've had problems develop with memory loss and the ability to function at a level that I was use to. I went back to college at age 43 and got as far as a junior before I gave it up because it was too hard to remember from one day to the next. Not to mention losing job after job. After changing to a newer medication about 4 years ago, I've seen some of my ability to function and memory improve. (Better living thru chemistry!) I would hate to lose even the little bit that I've gained back. I have already seen a marked decrease in memory and function since starting chemo so any more could be devasting to me. I'm hoping this will return with my desire to do anything that I use to love doing... lol I have wonderful doctors that's for sure! I agree with you totally! Dr. Schreeder said that he wanted to treat me agressively.. at the time it didn't seem so agreesive. I don't want to say I breezed thru the chemo but compared to some here, I did and only slight problems with the radiation because I had a heart by-pass 3 months before. The tumor was under the breast bone.. ouch! Before he did anything, we had regular chest x-rays, ct scan and a pet scan. Then 2 rounds of treatment; and a repeat of ct scans. Two more round of treatments; waited a month; then he said he wanted a ct scan of the chest and brain and also a full body Pet Scan to check out other hiding places as well. So he had the original one to compare this one to. I think this should be absoutely the minimum no matter what the stage. As you very well know, just because it's limited doesn't mean it's going to stay that way! I felt very well cared for and thought I was under constant survellience (SP?) Probably why the good attitude! God Bless ya! wenna Quote Link to comment Share on other sites More sharing options...
norme Posted November 13, 2003 Share Posted November 13, 2003 Wenna, I would say that you have had your share of problems and being in remission sounds great to me. YOu are the only one who can decide about whether to go further now or not. YOu know what your body can and cannot take. If you feel good now about what has happened and feel you can't do more, go with your feelings and you will be fine. Have you thought of a second opinion on this issue? Quote Link to comment Share on other sites More sharing options...
Guest kate218 Posted November 14, 2003 Share Posted November 14, 2003 what is pci and why have so many of you had it? Quote Link to comment Share on other sites More sharing options...
bart ziggie ( Greg ) Posted November 14, 2003 Share Posted November 14, 2003 Kate, PCI is Prophylactic Cranial Irradiation. It is an option for patients diagnosed with limited stage Small Cell Lung Cancer. It is used to reduce the incidence of brain metastasis or future recurrence to the brain. It usually is not reccomended for patients that have been diagnosed as extensive stage. Meaning their cancer is outside of the lung and traveled to another site. PCI is not a must for all limited stage patients. It really is an option. It is performed after the completion of chemotherapy and other treatments like chest radiation etc...... Hope this helps. Greg Quote Link to comment Share on other sites More sharing options...
OhioKat Posted November 16, 2003 Share Posted November 16, 2003 I'm glad someone asked what PCI was because I was lost. I did have the PCI & except that it made the rest of my hair fall out I don't think I've had any other last effects from it, although I have noticed a strange feeling in my head once in awhile, a feeling of fullness, like a reverse head rush & without any real cause. Its not painful just very strange, its like a blood rush to the head instead of out of it. I'll just be sitting there & it happens. I don't know if thats because of the PCI or not though. Quote Link to comment Share on other sites More sharing options...
MO_Sugar Posted November 16, 2003 Share Posted November 16, 2003 Wenna, Sounds like you and I are on the same path here. I am starting PCI on Tuesday for 15 treatments. As has been said, you are the only one who can decide what is best for you. God Bless you and may he guide you in your decision. Best Wishes, MO Quote Link to comment Share on other sites More sharing options...
wenna Posted November 17, 2003 Author Share Posted November 17, 2003 Sorry I haven't answered but I've not been feeling well. After talking with all the doctors.. neurologist included.. I have decided to go ahead with it. Not too many have experieced too drastic side-effects and the least of my worries is my hair. I cut it off thinking I'd lose it with chemo, but didn't.. so I hate this style so I'll shave and start over.. LOL Thanks for all your answers and best wishes. It helped me alot! Keep on truckin' and don't let this thing get ya down!!! wenna Quote Link to comment Share on other sites More sharing options...
bart ziggie ( Greg ) Posted November 17, 2003 Share Posted November 17, 2003 Wenna, congrats on making the descision. I think you will do fine. I found it a little intimidating at first i will admit it. It was kinda scary the first few treatments but you will do good. I believe the only reason i havent got brain mets right now is because i took the PCI, i may be wrong, but there is no way anyone can prove i am ! The thing about it is, if there is any cancer there lurking and waiting to come out later this radiation will kill its $$&%%^*^. I visualized in my mind thru all my radiation treatments. I pictured that beam just kicking the %^%^% out of the cancer ! There is an over the counter product called Aquaphor that i highly recomend for your head and forhead. Its like a petoleum base product. Use it often to help with the burn. Its really like a bad sunburn. I had 18 of them and when i got done i wasnt real happy about all the peeling of my skin but if you use the Aquaphor it will help alot. Just dont use it prior to you treatments. Drink plenty of fluids to and stay out of the direct sunlight as much as possible. I hope this has helped some. I think youll do great ! Keep us posted and let us know how it is going. Your Friend Greg Quote Link to comment Share on other sites More sharing options...
Remembering Dave Posted November 17, 2003 Share Posted November 17, 2003 Wenna, I'm glad you're doing the PCI. I have to tell you, it kicked Dave's butt worse than the chemo or the chest radiation, but a 10% better chance of escaping recurrence is like a gold mine, if you ask me. Glad you're dealing with the hair loss OK. Folks that say they don't want the PCI because of the potential permanent hair loss just flips me out. OK, I'd rather be dead than be bald for the rest of my life? Not sure about that one . . . but I have to tell you, Dave's hair had just started to show signs of sprouting when he started the PCI. It's been almost two months since he finished PCI and he's still as smooth on his noggin as ever. He also had some weird short term memory loss toward the end and maybe still has a touch of that. He also just felt weird - bad - but I think that subsided, too. Hang in there! God Bless, Karen C. Quote Link to comment Share on other sites More sharing options...
wenna Posted November 17, 2003 Author Share Posted November 17, 2003 I went in today and saw the radiology onc. Listened real close.. and gave him the thumbs up. He started me off right away getting the "trial run" today. It was a little surprising to have them make a mask of my face, but it seems that's necessary to keep the alignment the same each time. I am glad they do these "run thrus" as it lessens the apprehension a bit. I'm not sure if this is something my radiology dept. does or it's done for everyone, but if you have the chance.. take it. It helps. The treatment plan is 12-15 treatments. Once a day for 5 days per week. That will start on Dec. 4 and end a few days before Christmas. We had planned to take that time to get out and go some short distances to visit some family so guess we'll have to re-arrange all those. I was looking forward to that, so little down because of it. Better to get it all done and over with now I suppose. I can look at it this way.. last year I was in the hospital Christmas Day.. this year I won't be! Also heard that it takes about 3 months before you begin to sprout some twigs of hair.. so no worry there. I've bought and made some cute little hats.. lol I usually hate hats! Thanks again for your prayers and answers.. I really do appreicate the continuing support! It feels like they said.. yes, you're in remission but... I hate those buts! Am having a hard time celebrating remission with all this other stuff still happening. I know most of you are saying that what have I got to complain about.. and I do hope you get the chance to be in my shoes.. thanks for letting me vent once again! Pity party officially over! wenna Quote Link to comment Share on other sites More sharing options...
Guest kate218 Posted November 18, 2003 Share Posted November 18, 2003 Hey all, way back in March, my Dad was done with chemo (so we thought). His Dr. wanted him to do radiation in the head. There were no signs, but he said that it would be a preemptive strike. Dad went to the Radiologist, who scared the crap out of him and told him that he wouldn't do it because you only get one shot at it in the brain. His Dr. then said that there wasn't any protocol to do it and Dad made the right decision not to do it. He was going to do a clinical trial with some snail guts or something, went in for the pretesting of that and that's when we found out the %^&** tumor on the liver had grown. Are you getting chemo just to give you the 10% edge? I'm noticing that there are a lot of you from the south. Many of you from the same state. I wonder why? I know that it is all over, but many of you are from Alabama. Is the radiation before signs the standard treatment where you are? I'll be praying for you. Good luck! You seem to be in good care, Kate Quote Link to comment Share on other sites More sharing options...
MO_Sugar Posted November 18, 2003 Share Posted November 18, 2003 Kate, My Dr. has told me that once it starts in the brain it is MUCH more difficult to erradicate. Better to get the jump on it and kill any nasty little cells before they get a chance to take hold. I started my PCI today and I agree, lol, the mask is a bit much. No real problems but a bit of a headach this afternoon. Don't know if it is JUST a headache or if it is a side effect. Will have to wait and see if I get one tomorrow. Good Luck Wenna and God Bless. Quote Link to comment Share on other sites More sharing options...
wenna Posted November 18, 2003 Author Share Posted November 18, 2003 Hi Kate, I'm not sure if being from the south has anything to do with this or not. My Onc. Doctor is director of the Comprehensive Cancer Institute located in Huntsville. As such, he attends meetings and conferences all over the states, and keeps track of all the latest news and trials going on. They have this computer connected to all the hospitals, research facilities, etc. that just blew my mind. Even put my picture in there, and if I had qualifited for a trial, it would keep track of me and report to others on the system. Of course, I had to give permission, which I did gladly! To me, he is the best and most knowlegeable of new procedures that I could have hoped to find. Yes, I think he does "hang the moon" LOL!!! My particular circumstances held good promise from the start. The cancer was found so quickly (due to heart surgery) and was very limited. Several spots in the lungs.. one tumor outside the lung under the breast bone. I was given a PET scan in the begining to make sure I had no other areas of concern, then treated with chemo and radiation at the same time. My onc. believed this agressive treatment would "kick butt fast" and I believe it has done just that. In the beginning, he mentioned PCI, but he said we would wait to see what results came from the treatments. From his talks, before and after treatment, I gathered this is not done as a matter of course. It depends on a lot of factors and in my case, he felt I should do this because of the success of my treatments. He does not recommend this unless you are in remission with a "cure or near cure" prognosis. That's why so many people say it's a personal decision. Sometimes only you can weigh all the info from other people, different doc reports, lab reports.. and your general gut feeling. Also, one other thing.. I had ct scans chest and brain and full body pet scan almost two months after treatments. That is important to me because nothing had re-grown or enlarged or spread to other areas in that time, so to me it meant that it was gone and not spread so the decision of me doing it now or later.. I choose the now to make sure it wasn't going to re-surface in the brain, the only place I know the chemo didn't go. As you read I did have some side issues to take into acct. and believed I spoke to all the doctors concerned to get their takes on it. All agreed there was no indications of any side-effects that I had not already considered. All agreed that any side-effect would be mimumal (considering I'm frying my brain). Once my onc doctor had given his recommendation, the rad. onc just wanted me to say yes or no. He gave me all the info as far as any updates as I told him I had already researched this. He said it was a decision I had to make but he also recommended it in my case. So there you have the "why" I chose this. And I hoped it answered your question as to "is this done as a standard treatment". I don't think so in my circumstance but I can't tell you about others even if we are in the same area. Lots of different doctors in this area, and who knows how many different options. I hope this helps you or any others who are considering this procedure. I am deeply sorry that your Dad's tumor on the liver had enlarged. I'm hoping your doctor can find the right treatment for him! Your family will be in my prayers and please keep us posted! wenna Quote Link to comment Share on other sites More sharing options...
Guest kate218 Posted November 19, 2003 Share Posted November 19, 2003 Hi, the tumor enlarged, but now he is on Taxol and the tumors have, shrunk, shrank shrinked, however it is grammatically correct. But now, due to all of the meds he is on, he has second degree diabetes. If the cancer doesn't kill you.... Good luck to all of you. It is amazing what they can do and how they are connected. have a great Thanksgiving everyone! Kate Quote Link to comment Share on other sites More sharing options...
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