wenna

Wow, I am so amazed at you guys! This many replies was so totally unexpected! But what a joyous feeling!! Thank you all for your warm wishes!

This seems like an appropriate place to report that my 3 year anniversary is coming up fast and am doing better and better each day! Thanks to everyone for all the support and caring they have lent to me during all this time. Some days I thought it was hopeless; only to come here and hear the struggles of others who were having alot more trouble than I and were dealing a lot better than. Gave me alot of courage to see this thru! May God bless you all!!! Marilyn

Congrats Cindy!! Thanks for all those encouraging words you given!

Thanks so much guys for the good cheer! I'm crotcheting a blanket to help ends meet, so I'm keeping occupied.. and I find it calming. It seems that it's taking me longer, but at least I'm still doing something! My prayers are with each and everyone here! Marilyn

I'd just like to write to say.. I'm still alive and kicking! LOL It's been over 2 years since I was diagnosed with SCLC limited.. wow, seems like forever! I've been reading the board but haven't been replying and for that I am sorry! I've been on a "pity party" for a long time now, it's time I stopped that and started the "I'm alive" party! I've been trying to think if I have any words of wisdom to add, sorry.. I don't. What I do have to share, are my experiences. I was lucky. Plain and simple; God was looking out for me, as always. I was diagnosed after open-heart surgery when they found a lump under the surgery site. Kept telling them it was still hurting but finally my doctor took a real close look at other possiblities other than the obvious. Found it.. wasn't very big but causing alot of problems and pain. He set me up an appt. the next day with the lung dr. He ran alot of tests and had to wait out the weekend for results. Came for the results on the following Monday, found out the bad news.. He sent us to the Cancer Dr. right after that appt. and after a talk with him, he started me chemo. They didn't waste a moment. I was relieved they were treating it agressively! As far as the chemo treatment, I tolerated it well with few side-effects. Mostly no energy and that sick to the stomach feeling. Didn't lose my hair.. at the same time I was undergoing Chest radiation. Then came the good news.. finally. I was NED! Then came the decision of PCI or not. I know this is a personal decision and very hard to advise on. For me, it was the worst one I ever made. or the best.. you just can't tell if it saved you from getting brain cancer or not. The side-effects for me were terrible. I lost my hair.. well so much of it that I had my hubby shave my head. After 2 years only the part that I didn't lose has come back. The rest is thin and feels like I had a bad perm.. fried to say the least. I lost alot of memory. I work alot on the computer and had to re-learn almost everything. I use to have a very good memory. I've have other health concerns that keeps me from being active. But I am getting around still.. so that is good news. I don't mean to be down about this.. I really do feel lucky to be alive! I have complete support from my husband who works at home so he can take care of me. Four children and nine grandchildren who are constantly calling (they all live out-of-state). I was able to attend my son's wedding in Boston. Proud moment! So I hope this brings someone the knowledge that yes, you can fight and win! (Sorry for a long message) Love ya all, Marilyn

Thank you all for your replies! As usual I am at a loss for words to express my gratitude for all the help and support I have received from here. THANK YOU

Hi Everyone, Haven't posted in about a year. Got really weak after the PCI and have just been lazying around. I'm starting to get back some of the energy (and no more upchucking) that I use to have so that is also good news. AND my hair finally decided to come back a bit! Thought it never would! I still have some health issues.. as BC (before cancer) I had epilepsy, diabeties, heart disease, blah blah.. so still managing those ok. I've had several minor surgeries. Only worry now is why I am losing muscle instead of the fat. I'm eating enough for sure and all the right things, so that's not it.. one doc says more exercise will help; another one says less (extensive arthristis in spine) so I do moderate.. LOL As you can see from my sig.. I'm done with PCI now for a little over a year. There are some days I even forget I had cancer! Is this possible? YES!!! (Don't look in the mirror) I've kept busy, my husband finds things for me to do, and we keep one of our grandkids every Sat. evening! Life is Wonderful!!! Not one Dr.'s appt or x-ray this month! ah, but next month.. LOL One thing to remember is DON'T give up HOPE!!! Thanks to all here who gave me that hope! God Bless you all! Marilyn

Sandy, that's great news!!! So glad to hear your Dad is in remission!! I'm sorry about the breathing tho. I know that one is terrible to live with but it will get better! Congrats to your Dad! Marilyn

Oh Dan, I'm so sorry you're going thru all this pain! You'll be in my thoughts and prayers and hope we can see you thru this! I'm also going in for a day surgery to remove whatever is growing on my upper lip. But, my onc really wanted me to do it instead of needle biopsy. He said I had enough scars already and I'd be alot more comfortable.. So I think I know how you feel somewhat. Like I said, I'll be praying!! Big Hugs, Marilyn

Thank you everyone for the words of encouragment! Just what I needed!!! I am truly trying to live by that quote in my signature. But for a person like me that's so hard! Anne, I have a few extra "conditions" thrown in. The major ones being heart disease, diabetes, Epilepsy, lower back pain (what a mess) and COPD. I have a closet full of doctors and specialist.. The mess with my spine keeps me from doing alot of the therapy but I do what I can And I must say.. to me they are all the tops in their field. I'm lucky to have them on my team. Thanks again everyone! Marilyn

Just getting so I can type again and catching up on everyone. I've noticed a lot of new names, sorry you had to come but glad you have. I am (so far) one of the lucky ones have been told I'm in remission. So now for the update for those that know me. First I'd like to say, I had another full body bone Pet Scan done and a CT of my chest. NED!! Yes, I love him too! Now the but.... the PCI totally screwed me up. Sorry for the bad language, but I'm still ... angry?.. no, not the word I'm looking for. I just regret that I had it done. I have had so many complications since then that it's been hard to keep the spirits up. Thank God for my hubby (caregiver)!!! I've had surgery on my elbow, been in the hospital twice, dehydration, blood pressure problems, sugar problems and now there's this bump/cyst? on my upper lip. They are having the cyst removed and sent in for biopsy... yet more carving. At least this one is a cosmetic surgeon. Absolutely no strength ... I'm also losing muscle mass all over my body. I've lost 30# since having the PCI and 17# just in the last 2 months. Guess I've turned this into a "venting" post, sorry. I don't know how much all this is from the PCI and "they" can't tell either. I do know the swelling and scaliness on the head and the dead skin cells in the ears are from that. Memory was really bad but is getting better. So they keep treating the symtems of each case. Just fustrating. Wish me luck on my next bout! Of course I worry that it's another tumor.. but the blood work looks great so maybe not. I hate waiting!! Thanks for listening and hope this wasn't too long a post. Marilyn

I agree with everyone, second opinions can help if nothing but for information, which is a powerful tool. I had acid reflux and my bronchial tubes weren't that great to start with. So, yes, when the radiation treatments started, so didn't the pain. Eating has never been a problem for me.. but swallowing became intolerable! They gave me some stuff (mix) that numbed the area and made the swallowing so much better. Tasted terrible, but then you consider the alternative.... I believe your chances of getting better and keeping it that way are greatly enhanced by the radiation treatments. But that is my opinion and you will have to make the decision for yourself. Just do alot of research on it and then make your mind up. Here's hoping for your continued good news!!

I will be praying for your mother and your family!

WTG MO! Hope you enjoy the "time off for good behavior" and that it continues!!

Thank you everyone for the replies and good wishes. We did go out to our favorite Chinese Resturant. And I tell you it felt fantastic to see something other than a Dr. or lab office!! I hope to hear some good news (no matter how minor you think it is) soon; I'll be praying for all of you! wenna

Hi everyone, I've just completed my 6 months scans--CT scan of chest and MRI whole body bone scan-- ALL CLEAR!!! After doing the PCI, I lost my hair, of course, and was totally kicked in the rear as far as energy goes.. but I am definitely on the upswing now! I am actually getting nights where I sleep for more than 5 hrs!!!! You guys have been great! Thank you so much for being here for me. I know you can also beat this monster! Please just believe! Love, Marilyn (wenna)

I am also surprised and saddened by this news. I know I haven't posted much but Greg always gave me hope or answered my questions. He will truly be missed by all. Please accept my condonlences for your loss. May God bless you and your family. (((((hugs))))) wenna

Hi Ellen, I seem to be just behind you in PCI treatment.. I'll have my 6th one today (I think) and will have 15 treatments in all. I had a hard time making up my mind on whether or not to have the PCI done because of the possible memory lost. But my husband told me to do it and I trust his instincts.. so far I've lost a little energy but then again I wasn't doing that much after going thru the chemo and radiation treatments to my chest. I am so glad that you responded well to the treatments! That's great news!! Like everyone said, just pamper yourself. You've made it thru the worse part! Warm hugs, wenna

Wish I could shed a little light on this for you, but even tho I had limited sclc, my site was right outside my lungs and had muliple reasons that I had (and continue to have) pain and coughing attacks. My drs. are reluctant to give pain meds.. it has something to do with it may cover up some symtom of something else... who knows but mine's not bad either. Did you have radiation on that side? I know that really hurt me a long time afterwards. I would definitely push to find the reason behind your pain and cough. Hopefully someone else can help more. wenna

Hi Rosie, I am so sorry you have to be here, but we are here to hopefully help in some way. The more information you are armed with, the better you and your family will be able to cope with this. And we listen when you just want to vent so don't be afraid to. wenna

Your post was truly a testment of the love you and your mother shared during your lifetime. Hold on to those memories and yes, she no longer suffers but is in the arms of God now. I am so glad you could be with her. My sincere condolences for your loss and I will pray for you and your family. wenna

Oh wow... I am soo glad you posted this. I start my PCI tomorrow. I had no idea that it would actually hurt when I begin to lose my hair. See, I must be the only one that didn't lose any hair during chemo (maybe?). I was surprised as the onc. said I would. I was a little peeved cause I had cut 15 inches off to make it easier when I did start losing it. I got over it cause I was assured I'd lose what hair I have left now. But hurting.. no one mentioned that one. Red.. scaly scalp a possiblity. I found this really really soft yarn and crocheted a hat for myself so I guess I'm ready. Again Thanks for sharing your experience so that I can be prepared.. know what to really expect. wenna p.s. Can anyone tell me if you have PCI done, if cancer does return, can you have another PCI done if you go into remission again? or is this just a one shot deal?

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

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

Hey, Dave I just had a flu shot and it kicked my butt! I also already had an ear infection which was doing the same! Now I'm on antibotics and other stuff... the onc. gave me as a last treatment sorta.. 3 shots of procret and that really helped. He said my white blood cell count was down but with infections I wouldn't doubt it.. lol I hope you get your energy back soon! God Bless you a hundred fold!! wenna