Hi, I have been reading your posts for a couple of months now. You cannot know how much you all have helped me understand this awful disease. Thanks so much for being willing to share your day to day experiences. My mom has been going through all the tests and last week was given the diagnosis of sclc that has spread. We still don't know the extent of the spread. We go Thurs of next week (Feb 16) to find out and what her treatment will be. It seems so backwards to be planning to make her sick with treatments and she has no symptoms at all. This was found by chance after she was involved in a car wreck in Nov 05. Anyhow, the guidance I need, if anyone can help, is this. Mom lives with my sister about 25 miles from me, which is also in the opposite direction of the treatment clinic. Because I work a very flexible part-time schedule (as secretary for my church), I will be the main one transporting Mom to treatments. Plus, I will be looking after her if need be. What I'm not sure of is whether she will be able to look after herself after treatments or will need someone with her and for how long. So many of you have posted about the fatigue and various side effects, so I am hesitant to even consider leaving her alone. She will want to be in her own home with her own things if she is able. But if she needs care on a daily basis, I will need to make a place for her here where she can feel at home too. Otherwise, financially, I won't be able to do this; not to mention the stress of all the back and forth trips. My mind just boggles with all there is to think about and plan for. Oh, by way of info, Mom had a major stroke 3 years ago which left her with speech problems and some difficulty doing things like taking care of her finances. She still does her ADL's, cooking, shopping, driving short distances etc. However, this could pose a problem with medications she may need to take on a schedule and things like that. And lately she has become somewhat argumentative at times - mostly in the context of her speech problems. It's usually because she has said something using the totally wrong words and then she argues that she said the right words. She can be very vehement about it. It makes me wonder about whether this cancer has spread to her brain - and that is really scary. I just don't know how you guys cope. I just sit here and read and cry for you all - and us too. If you can, please help me know, sort of, what to expect once treatments begin. I know everyone reacts differently to different treatments. Thanks...Carolyn
Oh Carolyn....my heart goes out to you and your mom...seems so unfair since she has gone thru so much with the stroke and now cancer. I hope you find comfort and hope by visiting this board. My husband also has the SCLC and it has spread everywhere including his brain. If she has SCLC find out what type of chemo they will be giving her. Stan had Etopside and Cisplatin and do remember each person is different but it absolutely ruined his taste buds and he was so weak he did not shower for 4 days. But please keep in mind that each person is different. Stan could not stand the taste of anything and became grouchy (can you blame him?!) and lost a lot of weight. It took months for the metal taste to get out of his system. He has since become resistant to the chemo so they started him on another one which is Topotecan and it causes severe fatigue and low blood counts so they can easily get sick. But on Topotecan he lost his appetite a little but not too much which was great. Now as far as your mom being in the mood she is it is hard to say whether she has brain mets or that she is just fed up and tired of being pushed so hard with the stroke and now cancer. I cannot even imagine how I would feel. I have left Stan many times during chemo and leave him food that is ready for him to eat incase he wakes up. When he is recovering from chemo he does not like to be bothered and wants to sleep and we have 2 boys so we would go do the grocery shopping or errands while he rested so it was nice and quiet. Ask the doctor what he thinks about leaving your mom alone. Keep us posted on what you find out and my prayers are with you and your family.
Kim
P.S. Tuckygal visits this posting board and she is a survivor of SCLC so I hold on to hope everyday and hope you do too. She is so strong and such a great inspiration to all of us.
Last edited by Kimslos; 02-12-2006 at 12:52 PM.
Reason: Typo
Carolyn,.. Kimlos said it best... My husband also has SCLC with Brain Mets dx'd Jan 2005.He's gone thru all the chemo and radiation treatments. He tolerated them pretty well except for the weakness he developed.
We were told by his Oncologist with Brain mets he could no longer drive as his reflexes would not be as sharp due to the tumors. So without chanceing anything I do all the driving. The only time he got irritable after chemo was coming down off the steriods ..premeds. His blood counts went down so he took Neulasta and Procrit shots to bring them back up. He recently stopped all treatments he said he body couldn't take anymore.
Please take her DR's advice.. this is a decision only she can make wether to go forward.
May the angels hold your hands thru all this.
Audrene
I am so sorry Audrene to hear your husband's body can take no more but seeing what chemo does I can understand and respect his decision. I always worry the day Stan will tell me he is stopping treatment. (which I would respect and never call him a quitter if he did) If you ever get time please share with us what type of treatment he had and please remember on your tough days that all of us at the board are a big family and think of each other all the time and you are not alone. You seem so strong which I admire in so many of you on the board.
Prayers,
Kim
Hello, Carolyn (et al)....like everyone else in these discussions, I'm so sorry to hear about your mother. My experiences with both my parents reminded me of having a baby - no one ever tells you what it's REALLY like! Maybe because it's just too darn scary! I have to say from the start what the doctors told us about physical health - your mother will tolerate treatments much better if she's in good overall health. My mother had operable nsclc (two lobectomies, but refused radiation/chemo) and lived about 6 years with no visible physical signs of cancer until probably the last 6 months of her life (lots of coughing in the a.m. and lots of vodka for the pain, I'm sure). My father had stage iv nsclc and opted for anything and everything (whole brain radiation, chemo, Tarceva) that would prolong his life - this one was so much more difficult because of the physical and mental deteroriation of what I had always known as my dad - it was frustrating not knowing what to expect and no one could tell me - everyone said the same thing, "everyone is different." My father was a horrid, angry patient, my mother was not. I had to bite my tongue so many times and just pray that neither of them suffered, try to make each day count, tell each of them how much I loved them every single day. Hospice is a god-send and is a no-cost service for your family - you may want to give a call for emotional and spiritual support - just start building your relationships with a caregiver network - you'll probably need them. It's heartbreaking to watch (so get prepared mentally to be strong), yet the most rewarding, loving act you will ever perform for your mother - just know you are doing the best you can and don't knock yourself. Get things that will make your mother comfortable - blankets, heating pads, bulky foods (my dad tolerated eggs and toast really well), a chair for the shower, or a doughnut for bath, a walker, oxygen perhaps -Hospice is really wonderful at assisting with all of these things and they will come in and bath your mother, put lotion on her - it will make her feel better, although she may be reluctant at first - she may be angry, but she's probably just afraid. I always tried to put myself in their shoes and think about how I would feel if I were facing the same demons - it's hard, Carolyn. Much love and the best of luck in your journey; give lots of hugs and kisses to your mom.
Thank you all for your replies. I plan to spend as much quality time with my mom as humanly possible. Just 3 months after Mom came home from rehab after her stroke, her husband, my stepfather was diagnosed with mesothelioma. He developed a cough which he thought was "a touch of bronchitis" while mom was still in ICU. My mom, my sisters and I cared for him when his own children wouldn't even visit. He died Thanksgiving day 2004. I know there is never enough time to love them enough or say it enough. My Mom is a trooper. She's scared though - we all are. We know God is still in the miracle business - my Mom is one. The stroke she had was a massive hemorrhagic stroke (Not sure spelled right) with craniotomy to remover the clot/blood. We nearly lost her then, but by the grace of God she is still with us. And we have counted our blessings. Now we prepare to do battle yet again. I know you all are really familiar with that too. Kim and Robin, I will keep in mind to try to ask myself how I would feel or act if I were in my Mom's situation. I appreciate that advice. And I will be prepared for taste changes. The fatigue still has me concerned, and Audrene, I hadn't thought about the driving part because Mom does still drive. I will discuss those things with her Drs. and see if they think it will be a problem. I will post again and let you know what treatment(s) Mom gets and if mets are anywhere else besides between lungs. I appreciate your prayers so very much and you will be in mine as well...Carolyn
Carolyn, please do keep us informed as to how things go with your mom. I just had an afterthought about the driving situation - my father was furious that his independence was being taken away, but, from a legal perpective, keep in mind that you and your siblings need to protect yourselves. I'm not sure what your mom's asset situation is, but if by chance your mom's dr. recommends no driving and she does drive and causes an accident, the medical information (recommendation) from the doc will come out and you could stand to lose everything, in addition to endangering the life of an innocent person. This was probably one of the most challenging issues your family is faced with - I'm kind of surprised she is driving at all, considering the prior stroke. Just try to be as accommodating as possible and hide the keys every once in a while! I'll be thinking of you and please let me know if I can do anything.
Carolyn, my heart and prayers go out to your Mom, you and your family. A massive stroke and now cancer sounds so overwhelming. My health was otherwise good and I am still in my fifties, so I was the 'best' candidate possible for SCLC, according to my oncologist, since he cosidered it limited stage. My radiology oncologist gives my chances for making it five years cancer-free at 45-50%. I would like better odds, but we have to go with what we are given. I hope you can see each day with your Mom as a gift. I could so easily go into a major panic if I let myself think about my cancer starting again, but I tell myself daily that panic or depression would be ruining precious moments that have been given to me. If it helps in any way, when I was first given the information about this cancer, I resigned myself to the fact that I might not be here for long, and it really wasn't frightening at all. My family members and good friends cried about it more than I did. About all one can do is ask the Lord to hold their hand daily, and be accepting of what comes. I appreciate all those who say I am an inspirtation. Any strength I have comes from the Lord. I have read stories of people with advanced cancer who have passed the ten year mark cancer-free, and others who were gone way too soon. There is no rhyme or reason sometimes, only faith and hope. (I am sorry if I have talked about myself too much.) Love from Kentucky, Pat
