drerni Posted September 19, 2011 Share Posted September 19, 2011 Hi Everyone, My mom was just diagnosed with Small Cell cancer in her left lung. After speaking with the oncologist, he thinks it may be extensive. The tumor is about 5.6cm in diameter. I have a photo of the CT scan results, if anyone cares to help interpret them further. She should have her first appointment at the local cancer clinic by the end of next week to determine treatment. Everything I hoped it wasn't... was. I've read this board a few times looking for glimmers of hope and it's certainly been helpful. I just wish there was something I could do. Are there any SCLC survivors still around who could offer a word of hope or just share their experience so far? Warm regards, e. Quote Link to comment Share on other sites More sharing options...
ginnyde Posted September 20, 2011 Share Posted September 20, 2011 e. I have a friend who was dx'd 3 years ago with ext. sclc and is alive and living life to the fullest. She has been moved to scans every 6 months. She should be the poster child for this. I hope your Mother is right there with her and that the treatments are sucessful and easy on her. Quote Link to comment Share on other sites More sharing options...
jstdzy Posted September 25, 2011 Share Posted September 25, 2011 Hi E! Welcome, sorry for the late hello. I was dx'd with limited SCLC 4/28/08 and I'm still kicking! SCLC is very scary, but it does respond well to chemo. Sending prayers your way for your Mom and family. Dana Quote Link to comment Share on other sites More sharing options...
jaminkw Posted September 25, 2011 Share Posted September 25, 2011 Coming in a little late also. Am not a SCLC survivor but have become aware over the four years I've been on this journey that the survivorship of SCLC seems to have improved dramatically. Hope the treatment is doable for your Mom and that you see results quickly. Judy in KW Quote Link to comment Share on other sites More sharing options...
drerni Posted September 26, 2011 Author Share Posted September 26, 2011 Thank you so very much for the info and replies. She starts chemo tomorrow and these are the drugs they'll be using: etoposide // vepesid vp-16 cisplatin // platinol - aq dexamethasone // decadron ondansetron // zofran After doing more research, she's decided to start with Avemar (which I ordered today from the US) and a Maitake Fraction D Extract (also ordered from another online retailer)... And after chemo, she'll take some BroccoGen to help clear out her system. We're hoping for the best and I really appreciate the chance to connect with you here. Cheers, Ernest. Quote Link to comment Share on other sites More sharing options...
ts Posted September 26, 2011 Share Posted September 26, 2011 I hope you will keep her oncologist apprised of the supplements she is planning to take. I'm not qualified to comment on their use but a quick look at Sloan Kettering's site recommends stopping the Avemar a couple of days before and after scanning with a barium contrast, for instance. Quote Link to comment Share on other sites More sharing options...
drerni Posted December 27, 2011 Author Share Posted December 27, 2011 Thought I'd share some updates with everyone, since I found this forum immensely helpful and encouraging. Last week, my mom completed her fourth round of chemo and she is going for a full body CT scan tomorrow. We're hoping for the best Here's a brief history of what happened so far: Aug 29, 2011 - Dx Came in for a persistent cough and pain in the chest. Doctor recommended tylenol a few times already, and finally relented to send her for an X-Ray. Aug 31, 2011 - CT scan Found lump near the bronchi on the left lung and some other suspicious spots. Sep 2, 2011 Confirmation there is cancer on the lungs - found collapsed upper left lobe and diminished lung capacity. Sep 15, 2011 - Biopsy / Bronchoscopy Procedure in the morning. Was pretty hard on her. They also found her oxygen levels were too low, so she received 3L dosage of oxygen on a bottle / oxygen concentrator which was installed at the house later that day. Sep 20, 2011 - Met the Doctor Met Dr. Foley. Explained this was a Small Cell Lung Cancer and the usual about mortality rates and that we have up to a year of life left. Sep 27, 2011 - First round of chemo etoposide // vepesid vp-16 cisplatin // platinol - aq dexamethasone // decadron ondansetron // zofran This was followed up by two days of oral chemo (8 pills) & dexamethasone. Went pretty well. She didn't really feel any effects until three weeks later. Hair started falling out around that time, so she decided to shave it all off. Overall, feeling pretty good and solid. Oct 14, 2011 - Bloodwork Found out that blood count was too low to receive another Chemo, so it was delayed by a week. Oct 25, 2011 - Second round of Chemo Same cocktail. Started feeling some of the side effects finally. She was more tired this time around but still remained active with occasional walks. Experienced a little bit of weight loss. No vomiting, but she did experience some stomach pains. IV was followed up by two days of oral chemo (7 pills) Nov 8, 2011 - CT scan Tumor seems to be responding really well and has already shrunk from 5cm to 3cm and lung capacity was restored. She came off oxygen which was a small win. However, we found that two lymph nodes around the stomach area were enlarged. Nov 15, 2011 - Bloodwork Found that blood count was too low, so we had to delay treatment by another week. Nov 23, 2011 - Third round of Chemo The doctor increased etoposide, but lowered the overall dosage. This one hit the hardest. Mom ended up passing out about 5 days past chemo and broke her hand while falling. She is now in a cast. Felt very tired and beat up. The effects this time lasted a lot longer. Strong stomach pains. Dec 14, 2011 - Transfusion Bloodwork found that her blood counts were too low to receive chemo and were not recovering as quickly as needed. She received 2 units of blood. 2 days later she started feeling a bit better. Dec 22, 2011 - Fourth round of Chemo Nurse explained that this dosage is about 25% less then the first round. They also rearranged the post-chemo pills to taper off on the dexo and ease her into the tiredness. We're now 5 days after this treatment and she's just now starting to feel the tiredness come on. I bought a few supplements including B6/B12/Folic Acid; Zinc; Calcium & Magnesium; Astralagus which we'll start today. Idea is to help with the bone repair and boost the blood count. In order to increase energy, we'll try some Korean (red) Ginseng, Ginko Biloba and some Siberian Ginseng. ---- She has another CT planned for tomorrow (December 28, 2011), so I'll report back when we get the results. The next doctor's appointment is January 10, 2012 when they'll let us know how many more treatments she has left and what's next for us. The cancer seems to be responding really well to chemo and chances are they'll do radiation to the chest and maybe the brain (as a preventative measure) in the new year. I'd love to hear from any of you with experience and hope to share more good news with you on this journey. Happy New Year! Ernest. Quote Link to comment Share on other sites More sharing options...
Alan Posted December 27, 2011 Share Posted December 27, 2011 drerni, You might also ask them to look at the vitamin D level next bloodwork, good luck, She'll be OK, It is a rocky road and forget that 1 year outlook. Quote Link to comment Share on other sites More sharing options...
jaminkw Posted December 27, 2011 Share Posted December 27, 2011 So glad she's responding well to chemo but that broken hand is a bummer. She didn't need that! I agree with Alan, forget that 1 yr stuff. She's an individual, not a statistic. Sounds like things are moving forward in a positive direction. Best of luck. Judy in KW Quote Link to comment Share on other sites More sharing options...
drerni Posted January 10, 2012 Author Share Posted January 10, 2012 Just came back from the doctor's right now, with not good news. We had a CT scan on 22nd of December and 4th round of chemo on 28th of Dec. At the last scan on November 2, 2011, the main cancer was shrinking was was scanned at 3.3cm. With today's results, the cancer is at 3.5cm, and there's been no change in the stomach nodes. Doctor said there's no chance of putting the cancer in remission anymore and they're considering switching to one of the following treatments: - Vincistine + Adiamycin + Citoxan - Topotecan - Clinical Trials - We'll find out what's available early next week. As it sits right now, she'll get another blood test and a MUGA test next week... which means by the end of next week we'll hopefully figure out what to do next. I'm really disappointed with the news, but still holding onto a glimmer of hope we'll have another year or so together. If she chooses to not take chemo anymore, it sounds like it would be about 3 to 4 months of life. With the chemo's, it sounds like about an extension of 6 months to a year. If you have any advice / suggestions / experiences... I'd really appreciate them. Thank you, - e. Quote Link to comment Share on other sites More sharing options...
jaminkw Posted January 11, 2012 Share Posted January 11, 2012 Sorry the results weren't better. That is a very small progression, however, and it simply means they won't continue that chemo. Once you progress on one, you go on to another. Tolerance to chemo is key so try to encourage her to give the next a try. She'll know if it's doable or not. Good luck. Judy in KW Quote Link to comment Share on other sites More sharing options...
drerni Posted April 30, 2012 Author Share Posted April 30, 2012 April 30, 2012 Mom has been on Vincistine + Adiamycin + Citoxan for three rounds and last week they did another CT scan. The cancer has started spreading towards her shoulder and they are now going to start Topotecan next week on a three weeks on / one week off schedule. She seems in good spirits still and believes this will help. We just got the news today, so still in shock and processing everything we've been told. Not sure what else to do. - e. Quote Link to comment Share on other sites More sharing options...
Petunia Posted May 1, 2012 Share Posted May 1, 2012 Keeping you and your mom in my prayers. A positive attitude can go a long way. Quote Link to comment Share on other sites More sharing options...
dianew Posted May 1, 2012 Share Posted May 1, 2012 I am glad your Mom's spirits are good. I am praying for her and your family. Diane Quote Link to comment Share on other sites More sharing options...
Joppette Posted May 1, 2012 Share Posted May 1, 2012 Praying. Wishing for good results. Glad that her spirits are good! Judy in MI Quote Link to comment Share on other sites More sharing options...
drerni Posted June 5, 2012 Author Share Posted June 5, 2012 June 4, 2012 Since switching to Topotecan, my mom has only been able to receive 2 chemo treatments. Her blood count has been too low every time to keep things on schedule. Things are not looking good. She gets out of breath and tired by the time she walks to the bathroom and she can't stand long periods of time. It feels like we're out of options. I know we all have to go someday, but this is incredibly hard. Quote Link to comment Share on other sites More sharing options...
dianew Posted June 5, 2012 Share Posted June 5, 2012 I so sorry to hear about the low blood counts. That does make it hard and also causes all of the symptoms your mom is having - the extreme shortness of breath and fatigue. As Katie said, there is always room for some hope, and the doctors may have suggestions for building up your mom's strength. They do not have a palliative care program where I live, but I have heard good things about them. Perhaps that would be an option. My prayers are with your mom and your family. Please let us know how you and your mom are doing. Diane Quote Link to comment Share on other sites More sharing options...
drerni Posted July 24, 2012 Author Share Posted July 24, 2012 Earlier today, my mom passed away after a 10 month battle with lung cancer. She put up a extraordinary fight all the way until the very final moment. She was a loving, gentle and devoted person deeply dedicated to her family and I am incredibly proud and happy to have had her in my life for as long as I did. I already miss her more then words can describe. ------ Rest of this post is a warning for SCLC caregivers ------ Dad and I were with my mom the entire time and spend the last 26 hours with her at the hospital. That last stretch was incredibly hard. Although I've read about the dying process, most of it was like sailing a boat in pitch black night towards a 10,000 waterfall. We had no idea what was coming next and when. Talk to your doctor and nurses and find out as much as you can as it will give you at least an idea of what may come next, closer to the end. Something we certainly weren't prepared for was the onset of confusion. Apparently, many lung cancers will affect the electrolytes in the blood. As the calcium levels rise - they create confusion, restlessness and tiredness all at the same time. Make sure to read up on it if you start noticing any of those symptoms. I wish we did. To say I'm heartbroken would be a gross understatement. My mom and I have been through war, refugee camps and four countries before coming to Canada with next to nothing. Her path was never easy, but she always gave us her full love and devotion. Tonight, heaven has a new angel and I hope I'll do her proud until we meet again. Quote Link to comment Share on other sites More sharing options...
Petunia Posted July 24, 2012 Share Posted July 24, 2012 Words cannot express how sorry I am for you to have lost your mother. I do understand the "dying"process as I have been through it before. It is extremely difficult to be there at that time, however, very comforting. Know that it is not a "lung cancer" dying process but rather a very normal dying process (the confusion and so on.) You are very fortunate that you were there to show her comfort and know that you did all you can to make her comfortable. I have followed your story since the beginning and I have always been sending my good thoughts. Know that my good thoughts, prayers,and vibes, are sent your way to you and your family as I am sure all the people that visit this sight have you and your family in their prayers. I will, unfortunately be in your shoes one day with my mother, and I can only hope that I will be there to comfort and make her feel nothing more than the beautiful person that she is, as you did for your mother. This disease could break us if we allow it to...please tell me how you survive this (as I know you will) so I can take that with me whenever I shall need it (I am really hoping not too soon.) I, as well as others, do not know you as a face to face person, but we do know you as a person who understands more of us than most of the people in our lives.... you will get through this because you now have a guardian angel with you and everyone around you. Know that there are many prayers and thoughts sent to you and your family. Quote Link to comment Share on other sites More sharing options...
dianew Posted July 24, 2012 Share Posted July 24, 2012 I am so sorry to hear of the loss of your mother. I will keep you and your family in my prayers. Thank you for taking the time to share this with us. Quote Link to comment Share on other sites More sharing options...
izzyleung Posted July 25, 2012 Share Posted July 25, 2012 I am so sorry for your loss and I feel your pain and heartbreak. Petunia said it best, we may all have to go through that heartbreak at somepoint and just the thought of that gives me tears. You should be proud that you've walked the path and fought the war with your mom and accompanied her during the last part of her journey and comforted her with love and support. The disease changed all of us and I hope you can find peace and solace someday and knowing your mom in heaven will continue to guard you and love you. Sincerely, Izzy Quote Link to comment Share on other sites More sharing options...
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