DebsSky Posted October 4, 2004 Share Posted October 4, 2004 Hi All: Sorry I have not been very active with posting, but these last 2 weeks have just been a blur. To all the new people, welcome, and you will all be in my prayers! Here's the scoop on my Mom. We had been after the doctors to speed things up, but alas, Mom had to get sicker before they would get up and take notice. Anyway, she went into seizures one night and we rushed her to the hospital. The idiot doctor there had us believing that the Cancer had spread to her brain and that we were ging to lose her that night, so anyway after a scary ambulance ride to the city, it was confirmed that her electrolytes had bottomed out and that was why she had the siezures. To make a long story short, she has been quite sick these past two weeks and she has only just began to regain strength etc. It was confirmed that she has SCLC in her left lung (4.5 cm tumour), with some lymph node involement. She had her first round of chemo this past 2 weeks as well, Platinol AQ and Vepesid, 3 days per 21 day cycle. She will have 2 more rounds of chemo then she will have radiation. Her new onc. is wonderful, very caring, told us that the nightmare of a surgeon had no business telling her her that sad prognosis as he did not agree. He said that he will do everything in his power for her. The Cross Cancer Centre where she is being treated is awesome. They are all so caring and take awesome care of their patients. Fast forward to today, Mom is home now, slowly regaining strength and says she feels better than she has in a while. Her chemo was hard and we have to watch that her electrolytes etc. stay up, but overall she is doing alright. Now for a quick question for all you awesome folks, does anyone know any long term survivors from SCLC? Appreciate responses, love and prayers for all. Even if I do not post all the time, I lurk and pray for you all. God Bless, Deb PS. Posted in General by mistake, sorry!!! Quote Link to comment Share on other sites More sharing options...
Kel M Posted October 4, 2004 Share Posted October 4, 2004 Deb, My Mom had a similar experience to yours. She was diagnosed as having luing cancer and bone mets - even though the local hospital couldn't tell her what kind of cancer it was and they only had x-ray capabilities (they farm out scans/MRIs). They immediately began palliative treatment and scared the living crap out of my brother and I. We were so overwhelmed with information and fear that we didn't immediately think to start questioning things. When it became clear that Mom actually only had one tumour in her right lung, we began to doubt our local hospital's ability to deal with Mom's case. We got her out of there and into a superior treatment facility in Montreal and the turnaround was amazing. Mom is almost one year out of diagnosis (well, technically 2 months away - but it feels like longer) and she is doing pretty well. She's been able to continue her leisure activities and makes the most of each day. Long-term survival is something I pray for, too! I have to tell you, when I see Mom doing well and looking pretty healthy, I believe it's possible!!! I wish it for your Mom and everyone living with cancer! Prayers for all, Kel Quote Link to comment Share on other sites More sharing options...
deruo Posted October 4, 2004 Share Posted October 4, 2004 Hi Deb, Your story sounds VERY familiar. I can't tell you about long term survival, but like you, am hoping for it. It took the system here in Ontario well over a month to get a confirmed diagnosis, and then we were told that it would take 2 weeks to get in to see an oncologist. A trip to the emergency room less than a week later, with mom SOB got her started on chemo in 2 days, just last month. My mom is sounding better by leaps and bounds. She starts her second round of chemo this week, and though her hair is really starting to fall, she's got a collection of scarves and a great wig already. No one has told us definatively about radiation yet, but I'm assuming that is in our future. It's great to hear that Kels mom is doing well too. I know that there are a few others here who've been living with SCLC for quite some time. I'm sure you'll be hearing from some of them in short order. I'm looking forward to reading what they have to say as well! d. Quote Link to comment Share on other sites More sharing options...
Andrewsmom Posted October 4, 2004 Share Posted October 4, 2004 I'm not sure what you consider long term but I'm coming up on 3 years. The first year after diagnosis was pretty awlful with treatment going on about 10 months. But, I've felt terrific for the last 2 years, power walk 3 miles a day, work part time, and mother my nearly 10 year old, very active son. My onc told me that most people who have a relapse tend to do so within the first year. My prayer for you and your family is that you will have your mom with you for many more happy years to come. Rebecca Quote Link to comment Share on other sites More sharing options...
deruo Posted October 4, 2004 Share Posted October 4, 2004 Thanks Rebecca and congratulations! I think one of the scariest things when learning about SC was reading (in places OTHER than here) how life expectancy was short, months in some cases. Further, even now I'll come across an article and try to avoid parts that make mention of life extension. Happy to say that since I found this refuge here, I haven't gone looking for statistics or prognoses. I wish you the very best, and continued good health! d. Quote Link to comment Share on other sites More sharing options...
MayFrog Posted October 4, 2004 Share Posted October 4, 2004 Debs, Deruo and Kel..... So glad to hear your respective moms are doing well!! It is a long road, and chemo can knock the cr*p out of you, but the results are well worth it!! I think with all the new combo's of chemo being given, and new parameters for radiation, etc., we will be seeing longer and longer survival rates...There are quite a few on this board who are years out from initial dx....I hope I will find myself in that category, and I'm wishing the same for your moms! Andrewsmom.......you're an inspiration......wtg!! Mary Quote Link to comment Share on other sites More sharing options...
Kel M Posted October 4, 2004 Share Posted October 4, 2004 It's always great to hear stories like yours Andrewsmom! It makes everyone feel good and gives us hope that there is a way to live well with a disease such as cancer. It brings gladness to my heart, it truly does. Deruo - haven't heard from you for a while. Glad to hear your Mom is feeling better. How are you doing? The first weeks are a real blur. Mom was treated with Cisplatin and Etoposide by the way. She's at the Oncologist's office this afternoon. He had some concerns a few weeks ago that she had some troubling symptoms. We are hopeful things have settled down and that he will be more positive today. You're all in my thoughts! Keep coming back! Kel Quote Link to comment Share on other sites More sharing options...
DebsSky Posted October 5, 2004 Author Share Posted October 5, 2004 Kel, Mary, Rebecca & Deruo: Thanks for all your replies and sources of inspiration. I have read and noticed the similarities between our stories Kel and Deruo. I had been meaning to PM you 2 and wish you both the best of luck with everything and I will keep all of you in my prayers. Deruo: Our stories are so similar that it is scary. Both of our mothers are receiving their treatment at about the same time as well. Thank heavens that it has finally started. My mother is going to an awesome facility in Edmonton, Alberta called the Cross Cancer Institute. Take good care of your mom and keep your chin up. If you ever need a pep talk send me a line or 2 and I will get back to you right away. Kel: My mom is on the exact same chemo that your mother was on, thanks for sharing that! You people on this board have been my life line since the DX and I wish you all happiness and good health. Take care, God bless, Deb Quote Link to comment Share on other sites More sharing options...
Cindy RN Posted October 5, 2004 Share Posted October 5, 2004 I was diagnosed Feb. 2001, which is 3 yrs and 9 mos!! I have had one relapse during that time but am 1 yr and 2 months since last chemo---yeah! There are some long term survivors. Don't always believe the stats. Cindy Quote Link to comment Share on other sites More sharing options...
DebsSky Posted October 6, 2004 Author Share Posted October 6, 2004 Hey Cindy: Thanks for chiming in, you are definitely an inspiration. How are you doing with the pericardial effusion? My Mom has a small one as well. Thanks and prayers for all, Deb Quote Link to comment Share on other sites More sharing options...
paddy Posted October 6, 2004 Share Posted October 6, 2004 I think you will find there are some long-time survivors here Deb, and probably elsewhere too. I am so glad your Mom seems to be doing well now, what a scare they gave you. Paddy Quote Link to comment Share on other sites More sharing options...
deruo Posted October 7, 2004 Share Posted October 7, 2004 Deb, Thanks very much. You keep me in mind if you need someone to talk to as well! Mom started her second cycle today (as an outpatient). We've got a brand new Cancer Center here and besides being visually beautiful, the staff are extremely caring and friendly. Met the new onc yesterday. The pharmacist at the center today said she sounded much better than last time they spoke, and said it was a good sign. Mom must be feeling better - she went out shopping all afternoon with my sister-in-law! I ended up calling just to make sure everything was all right d. Quote Link to comment Share on other sites More sharing options...
stand4hope Posted October 7, 2004 Share Posted October 7, 2004 Hi Deb, I'm a little late here and don't know much about SCLC, but wanted to let you know that I'm glad your mom is starting to feel better. When they feel better, we feel better, too! Love, Peggy Quote Link to comment Share on other sites More sharing options...
Addie Posted October 9, 2004 Share Posted October 9, 2004 Now for a quick question for all you awesome folks, does anyone know any long term survivors from SCLC? Appreciate responses, love and prayers for all. Even if I do not post all the time, I lurk and pray for you all. Hi Deb...and I'm sorry I didn't see this sooner! Wanted to tell you that my PCP told me at dx, that he has TWO patients who are 6-8 years out from diagnosis with sclc!!! That has been a beacon for me....that thought! I figure if they can do it, so can I.....and so can your mom! Also, our own CindyRN on these boards is a long term survivor of sclc extensive. She's working on 4 years from dx, I think!! Like your mom, I had one tumor in my left lung (1.5 cm) and enlarged lymph nodes that tested positive for sclc with a biopsy. I finished 6 cycles of chemo and 31 days of concurrent radiation and just this past Wednesday got scan results.......and I'm NED! No evidence of disease! I'm so glad you got your mom to a competent medical team and I hope she regains her strength soon...but tell her (and this goes for you too) NEVER give up hope! Keep forging ahead and keep a positive attitude. I did...and I'm convinced it not only helped me cope with treatments, but also helped get me to NED. Also...make sure she stays hydrated during treatment! It's really important. I drank 1.5 - 2. liters of water daily! Holding good thoughts for mom and you...hoping she does well from here on out. Keep us posted, ok? Quote Link to comment Share on other sites More sharing options...
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