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  1. I have been reading the forums for a while, so I decided to write finally. My brother is 50 and was diagnosed with small cell back in May, after 2 months of cough and throat issues. (He was a smoker for about 30 years and during this winter he had an episode where he inhaled the fire place smoke for quite a while, wind was backing up the smoke indoors) The PET scan back then showed a mass 5cmx8cm, (main right bronchus and lower lobe bronchus) and a conglomerate of enlarged lymph nodes, all on the right side. He started chemotherapy immediately with cisplatin and etoposide, He had 4 cycles of chemotherapy, during which he was feeling fine and he actually got better in a sense that he stopped coughing and his breathing improved. Fatique was the only side effect, about a week after chemo and some blood pressure changes, but for the most part I think that he could not have had a better experience with chemotherapy. He got a control PET scan a week ago with very good results (if such thing can be said for sclc, but it is something), the only detected mass is 3cm in the right inferior lobe. All lymph nodes (again right side only) are under 1cm (slightly enlarged) as the report says. Now we need to have a meeting with a surgeon to check the possibility for a surgery and of course with the oncologist again to decide on a course of treatment. It seems to be regional still, or local, as I am not sure what do enlarged lymph nodes mean, is it spread there or is it just a reaction of the immune system. (if anyone can comment on this please do). No lesions detected in other organs. He is doing pretty well as I said, he can drive alone etc. If surgery is not an option, radiation is the next step. It seems like if it is a surgery it will be a lobectomy, but I am doubtful about the previous locations of the cancer (main right bronchus) if that would not be a location that would allow for a recurrence. This is my introductory post.
  2. I was diagnosed with small cell carcinoma last month. I had pneumonia in late November, when the area of concern showed its ugly head. I didn't go to my pulmonologist until over a month later, when I wasn't improving much from the pneumonia. He ordered a CT scan then a biopsy. Now I'm exhibiting symptoms are spread to the bones. I have yet to have a single treatment. Looking for hope I guess. Or brutal honesty
  3. hi all, my dad was recently diagnosed with stage 3 SCLC. i'm truly devastated. he is my best friend and i would do anything for him. i'm here because i'm looking for advice on how to best support him through this journey. i'm already having concerns with the kind of care he is receiving. he was initially told by his pulmonologist that there is no chance for remission with SCLC because of how aggressive it is and that treatment was used to slow down the progression of the disease. he told my dad he could have a few months or he could have a few years. that doctor referred him to a cancer specialist who is now telling my dad that there is a chance for remission and he could be with us for 5 years. the cancer has yet to metastasize however my fathers treatment plan seems highly aggressive. he has 3 spots on his right lung with the largest being 15mm. the plan is for him to do a total of 6 weeks of treatment over a 12 week period. the on weeks he will receive 5 rounds of radiation and 3 rounds of chemo. once that is over the doctor will perform radiation on his brain in an effort to "zap" any cancer cells that may not be visible on an mri. i asked my dad what stage of stage 3 he has and he said the doctor didn't say. this doctor also told my dad he would be able to drive himself to his treatments because his is an otherwise healthy person. i don't believe anyone would be able to do this. my dad won't get a second opinion. i've already told him i will support him in whatever he chooses to do even if that means no treatment at all. i just want him to be as informed as possible but in the end this is his battle and my job is to be there for him with patience and understanding. i know he is finding comfort in talking to me about everything because there are some things that i understand. not because i have or have had cancer but because i have chronic health conditions and they can be pretty brutal to treat. i know the frustration of navigating a team of doctors and having all of them present different opinions and treatment options, being poked and prodded like some sort of science experiment, the endless frustration, and the back and forth between emotions that are hard to describe. it's lonely but after he told me of the diagnosis we had a long talk and he told me he felt so much better about everything. there are things that i'm going to understand better than the rest of my family but this is also so foreign for me. my questions are does this treatment plan sound crazy or realistic? if you are a parent with cancer what are things your child has said or you wish they would say to help you in your fight? when do you wish they would just stay quiet and listen? i appreciate you taking the time to hear my fathers story and my concerns. any advice would be greatly appreciated.
  4. After 3 weeks of research, my take on "standard" treatments for limited-stage SCLC is as follows: (surgery not possible) 1st-line treatment - Concurrent chemoradiation with Cisplatin + Etoposide (CE) + local radiation. Prophylactic Cranial Irradiation ( PCI) is called soon after treatment if complete or partial response is noted. 2d-line treatment - Original chemotherapy (CE) for relapse > 6 months. Topotecan chemotherapy for relapse < 6 months. A possible alternative to Topotecan is CE + Irinotecan chemotherapy but additional toxicities occur; individuals must be in very good health. 3rd-line treatment and beyond - Nivolumab (OPDIVO) or Nivolumab + Ipilimumab (YERVOY) or Pembrolizumab (KEYTRUDA) immunotherapy. Please note that I put quotes around the word standard. There are no standards after 1st-line treatment, only FDA approvals and typical recommendations. My personal opinion of Topotecan is not good based on literature comments about poor response rates. My hope is that my wife has a complete or partial response for greater than 6 months where Topotecan appears to fall by the wayside. For 2nd-line treatment < 6 months, I hope my wife's onc is thinking immunotherapy. Note that all post 1st-line treatments above appear suitable for extensive-stage SCLC. I'm not a doctor and my research may be flawed so please don't take my comments above as gospel. I believe I can now talk somewhat intelligently about "standard" treatments with my wife's onc. I will certainly put the burden on him to explain why or why not. I can always ask for a second and third opinion. 2 other things are fascinating to me - Stereotactic Body Radiation Therapy (SBRT) ... thx Tom ... and Lurbinectedin. However, there appears to be very little discussion on realistic use of SBRT and stage III SCLC (>5cm). It may be a hard sell to my wife's onc and radiation doctors. Lurbinectedin is only in trial stage. If you spot something that is incorrect or you believe the literature says otherwise, please comment. Any thoughts on the various treatments would be welcomed. Steve
  5. Hello all, hoping you can help perhaps? My 74-year-old mum has been in hospital for sclc top-left lobe. That was removed in surgery last week, and despite having a pulmonary bleed on the table which early ended things, and a lung infection, mum has been recovering well. She was told by her oncologist today that her recent headaches are because the Squamous Cell has metastised to her brain - I don't know how many, or how bad. But he has told her she has less than a year to live. I am trying to see her oncologist tomorrow, and he will no doubt tell me more, but are there any links I can be looking at, about potential treatments? I also need to know what to say to someone who has just been told they have a year to live. Any advice gratefully received, I'm in the UK. x
  6. Joined the Marine Corps at 18 years old and after 5 years of honrable service was discharged this February right after my 24th birthday. April 15 my doctor diagnosed me with Small Cell Neroendocrine Carcinoma of the lungs extensive stage, a very rare cancer especially for someone as young and healthy as myself. Ive always been extremely optimistic through out my entire life and i even approached this situation with positivity. I constantly tell myself that im not statistic but lately my prognosis has been mentally beating me to my knees, ive lost whatever hope and motivation i had when i started. I desperately want to "live like i was dying" but i lack the purpose and the drive. Does anyone have advice on how to find joy in the moment and take advantage of the time you have left? Thank you so much for taking the time to read this.
  7. As I shared with the group a short time back, after a year of NED (no evidence of disease), I was diagnosed with a local, limited recurrence of Small Cell Lung Cancer (I.e in the same location as original disease with no regional or distant Mets) I received 4 , 3 day cycles of concurrent Chemo (Carboplatin & Etoposide) and Immune Therapy (Tecentriq - day 1 of each cycle only) with three weeks between each cycle. Findings from post treatment PETCT on May 1, found complete regression/response to treatment, no new or old nodules and no remaining areas of suspect FDG uptake. One of the cleanest scans I’ve ever had. Will see Medical and Radiation Oncologists next week to review results, any next steps (preventative) and begin maintenance immunotherapy on Tecentriq. Will continue to keep you posted. - Looking forward to my “scanxiety” free weekend! Happy to provide any further details that may be helpful to anyone.
  8. Hi, My name is Judy and i just joined the forums here. I also just got the results of my tests, cat scan, pet scan and biopsy on July 2, which resulted in a diagnosis of sclc and i'm not sure what stage yet. I just had my first consultation yesterday and the doctor ordered chemo and immuno therapy today. Not sure when it will start, as it has to be approved by my insurance first. In looking for answers regarding small cell lung cancer, i ran across this forum and decided to join. Hoping to give and get answers going through this journey. Believing knowledge is power. I sincerely wish you all the best. God Bless
  9. Hi everybody, A newbie here and new to recently being diagnosed with sclc located, to date, in my left lung.(2 nodules upper and lower) I was under the impression that i had limited stage, but after some research and other opinions (including my oncologist) am confused as to what exactly i do have. My oncologist said extensive and then after i questioned him about it, he seemed to question his initial thought and was double checking stats on his computer. Of course i will ask him again, but thought i would ask the question on here in hopes that maybe someone could clarify for me sooner. Or if there's even a simple explanation of what determines each. I did read that with small cell there are only two stages, limited or extensive? I was of the opinion that if the cancer had not spread outside of the initial starting area, which is the case so far, that it was diagnosed as limited and extensive only if it had spread to other organs. Does anyone know the answer to this?? Thanks, in advance...
  10. Hi, my father had been dx with SCLC in January and underwent the cycles of carboplatin+ etoposide + tecentriq (immunotherapy) with fairly good response. Now his onco team are planning to do radiation (IGRT) along with carbo+ etoposide. They are saying adding tecentriq to the regime will be too toxic. Has anyone undergone/going through chemo+immunotherapy+ radiation simultaneously ? Prompt response would be of great help
  11. New to the group and interested in learning all I can about SCLC. My wife was just diagnosed with Extensive Stage Small Cell Lung Cancer.
  12. My mother was diagnosed with Lung Cancer 1 year ago. The tumor and a lobe + some was removed. Test results showed that it was limited stage SCLC. She decided not to do any treatment. A year later, she has had no recurrence but now has a Pulmonary Embolism. From what I am reading, this has a connection to lung cancer and I am wondering if it could mean that the cancer is coming back? Does anyone have any experience with this? Thanks!
  13. Following a CT of Chest, Abdomen and Pelvis, & Brain MRI on October 23rd, a PETCT on Nov 3 due a suspicious New Nodule (1.1 cm x 1.3 cm) and a Bronchoscopy on Nov 10 (due to mild FDG uptake of 3.1 SUV) , I am happy to report I remain in NED status, hitting the 9 month mark on my 3rd round of surveillance testing. I will have to wait 4 weeks for return of all cultures taken but I’m happy the tissue samples etc were all negative for cancer. While this is what they expected, out of an abundance of caution, they decided to do the bronchoscopy. I remain a bit concerned that my Chromagranin A levels were somewhat elevated. They tell me this is likely inflammation related if I have or recently had a bacterial lung infection or pneumonitis. So not quite the “nothing to see here” result I would like, but certainly quite positive. Pelvis and abdomen also clear, and brain MRI continuing to improve since PCI in March. A great result and something else to give thanks for.
  14. Hello Lungevity Forums, my name is Michele. I was diagnosed with limited SCLC on June 15th 2018 and finished chemo/radiation August 31, with a near complete response. I had a very difficult time with treatment and as a result my oncologist is not recommending PCI (prophylactic cranial irradiation) but my radiologist is advising that I do. I’m terrified of further radiation and the permanent side effects. Im meeting with another hospital next week for a second opinion regarding PCI and welcome any thoughts, opinions or experiences here on the matter. Thanks for listening.
  15. Jessica. 38. Mother of 2 teens. Caregiver to mom whom is caregiver to disabled brother. My mom is my world and always has been. The thought of losing her totally devastates me. We have always been close, we have always called each other 2-3 times a day just to say hi. Hang out 2-3 times a week for lunch and what not. My mom was there when nobody else was. Our shopping and lunch dates have turned into biopsy, oncologist and chemo dates. I wouldn't have it any other way. It just gets hard. June 25th was the day. I woke up so excited it was 6 months until Christmas! Shortly thereafter my 65 year old mother called me and told me she had went to urgent care last night because she couldn't breathe and they had found a 7cm mass in her left lung. Her self diagnosed pneumonia turned out to be lung cancer. My excitement had quickly turned to shock. Will my mother even make it until Christmas? She had a persistant cough that wouldn't let up with occassional tinges of blood. I had been nagging her to go to the doctor and have them recheck her COPD. I figured she was a pack a day smoker for the majority of her life they were just blanketing the real problem. The issue was they did not think it to be lung cancer as she had just had a screening in October 2017 that was totally clear. They did a PET scan which showed cancer in her lung, breast, liver, lymph nodes, and adrenal glands. Brain scan came out clear. Liver biopsy showed it to be advance stage small cell lung cancer. Breast biopsy confirmed. Oncologist recommended a clinical trial. Without treatment prognosis was 4 months to live. My mom signed up. Unfortunately she would be unable to partake due to emergency chemo that had to be administered over labor day weekend due to a collapsed lung. She seems to be doing well for the most part but has developed a terrible cough with brown sputum. (is this normal?) The oncologist told us her cancer is so advanced that they aren't going to bother with radiation. (is this standard?) The plan now is to continue with Etopiside and Cisplantin chemo for 6 cycles every 21 days.
  16. Happy to share that my second round of surveillance testing shows no evidence of disease, no nodules (new or old), no densities (new or old) and no other findings requiring particular short term monitoring. I am now 6 months NED. This result was particularly good news as in mid May, I experienced a period of extreme fatigue, headaches, balance issues and nausea. I was literally fine one day and in a very bad way a day later. I was given a full round of tests and scans ( including check for pulmonary embolisms) and IV infusion of nausea medications. Consensus was pneumonitis and general inflammation. With the help of prednisone , a lot of sleep and time to heal, this situation resolved over a 4 week period and I have now had the best set of scans since my diagnosis. I’m back to my full gym/exercise regimen and went to a family reunion in Canada (1st time my family (siblings, cousins, nieces and nephews) has seen me since my diagnosis. Now I’m looking forward to a trip to Disney with my family and a chance to get back to living a bit more. For reference I was diagnosed with Limited Stage SCLC 10/31, 2017 and achieved NED in late January 2018 following Chemoradiotherapy.
  17. Three months following a 1/23/17 PETCT reporting complete response to 1st line treatment (NED - no evidence of disease), I’m happy to say my 4/23 PETCT reports “ No hypermetabolic masses or lymphadenopathy in the neck, chest, abdomen or pelvis” So while my name is Leo, today I’m happy being called NED . As a point of reference I was diagnosed with Limited Stage SCLC Oct 2017, underwent 4, 3 day rounds of chemo (Carboplatin/etoposide) with 30 concurrent Radiation treatments & concluding with PCI. In addition to the PETCT , a serum Chromogranin A Tumor antigen assay(test) fell within normal range for the first time since immediately prior to treatment. While acceptable ranges vary by the lab performing the test (protocols), the normal range for my lab was 0 - 95. Prior to the start of Chemoradiation treatment, my Chromogranin A was 900+ (Nov 13/17), had fallen to 165 by Jan 2 2018 (prior to my final round of chemo) and is now at 92. Needless to say I very happy with this outcome. That said, there were a couple of areas of Small FDG (sugar) update presumed to be effects of radiation treatment and pneumonitis related inflammation. These areas will be monitored over the short term to ensure the voracity of those conclusion. I’m told these radiation related effects are not unusual this early in the monitoring period. I hopeful in that regard. Any one else experience this? My final step in monitoring is an appt. with my Radiation Oncologist on May 1, having completed visits with my Pulmonologist and Medical Oncology team yesterday. I’m not only thankful for theses results , but also for the words of wisdom, advice, and experience sharing I have found here. It means a great deal!
  18. Today I completed the final 5 days of my 10 days of PCI , a preventative step to reduce risk of brain Mets associated with Small Cell. This is a low dose whole brain radiation (25 Gy in 10 fractions (2.5 Gy per session) treatment. My last 5 days/treatments have been nearly as uneventful- as the first five. The fatigue picked up in week two and skin redness/irritation on neck & head extended to my face. I managed this and continue to manage this using Aloe Vera, Aquaphor ointment spray and Bag Balm skin moisturizer interchangeably. I went from sleeping 6.5 hours a day in week 1 to 8+ hours in week 2. Also my dose of Memantine doubled this week (1 5mg pill 2x per day) with no increased side effects. My dosage will increase again in the coming week (week 3) and then drop back in week 4, after which the medication will be discontinued. My hair is intact at the moment, but I’m told it’s going at some point soon (it actually got off to an early start in my 30’s) Midweek, a CBC was taken to measure any effect on WBC count (expected to be minor) I continued my daily brain exercises through Lumosity, and online tests/exercises through Cambridge Brain Tests. While early in the process, I have not experienced any short term memory related side effects, balance issues etc but will continue to monitor that. My next follow up with Radiation Oncology will be May 1 (6 weeks) , following my first set of new tests since NED (PET/CT -Skull to knees) and Chromogranin A (CgA) neuroendocrine Tumor marker (serum) & CBC , scheduled for 4th week of April. - I think the wait between NED and new tests is the most anxiety laden - Once again, happy to answer any questions about this, my SCLC diagnosis, treatments etc.
  19. Today I completed the first 5 days of my 10 days of PCI , a preventative step to reduce risk of brain Mets associated with Small Cell. This is a low dose whole brain radiation (25 Gy in 10 fractions (2.5 Gy per session) treatment. Prior to beginning treatment, I received comprehensive brain imaging via MRI (standard and custom views/slices). The rationale for this was twofold. 1) Give me more information to support my decisioning process (I.e. do or not do PCI) and 2) ensure no existing Mets were detected and if so be positioned to start stereotactic radiotherapy (targeted vs. whole brain radiation). My MRI came back clean (no Mets detected) which was a relief. One area of concern even with this low radiation dosage is the risk of neurocognitive impairment over time (decline in short term memory is frequently mentioned). There are a number of studies that have looked at this, and my Radiation Oncologist reviewed the pros, cons, risks, and rewards to having PCI. She also offered (if i chose) to prescribe Memantine to be taken during and following PCI treatment (not permanent). This drug (which is more usually associated with Alzheimer treatment) is said to help support memory, awareness etc., and has been used in some clinical trials with some positive indications. So with all that I elected to have PCI with Memantine included as part of my treatment. My first 5 days/treatments have been fairly uneventful- some moderate fatigue, periodic sour stomach (lasts a couple hours after taking medication), and some skin redness on neck & head. I was advised to reduce the running/jogging and weight lifting portions of my exercise during treatment and get as much rest/sleep as possible, which I’m doing. P.S. I am also doing daily brain exercises for lack of a better term. The free version of Lumosity, and online tests/exercises through Cambridge Brain Tests (also free when you set up an account) are among some tools I’m using to exercise my brain. Getting some brain drills in place will I believe help me as I go through this treatment and whatever else may come my way in the future. Plus they’re a lot of fun, and you can track your progress. Im grateful PCI was an option for me & hope this information may be helpful to others. Happy to answer any questions about this, my SCLC diagnosis, treatments etc.
  20. I’m new to this group. By way of introduction, I am a 64 male, diagnosed on Oct 31, 2017 with Limited Development Small Cell Lung Cancer (SCLC). Chest CT that followed a bronchoscopy indicated a 3.7 x 3.2 cm lobulated soft tissue mass in the right hilum. No involvement of lymph nodes or Mets. Treatment began Nov 13 /17 with 4 rounds (3 days/round) of Chemo & concurrent Radiation (30 treatments). Treatments ended Jan 17/18. Post Treatment PET/CT indicated complete response. Scheduled for PCI (Prophylactic Cranial Irradiation) to begin Mar 12. 1st round of monitoring tests scheduled for April. Biggest challenge now is trying to distinguish between post treatment side effects versus relapse symptoms. Hope to learn a lot from this group, and contribute where I can. Happy to share.
  21. I've had a tough few months. My father died 2 months ago of long-term Parkinson's Disease. In the midst of her grief, my mother, who was the picture of health, collapsed and had a seizure. She had a small-ish tumor (<3cm) removed from her brain. She bounced back from that like a pro and was walking 2 days after. She is due to have gamma knife just to remove any residual malignancy. However, we found that the tumor had metastasized from her lung. To make matters worse, though the doctors originally thought it was Adenocarcinoma (lots of new treatments for that), it turned out to be SCLC. I'm totally distraught - the prognosis is so grim for this. I'm looking for some good news - any good news. The only thing I have to say is she is in excellent overall health and spirits, and the doctors were all amazed by her performance status. In addition, though by definition her disease is extensive stage, it's actually quite limited - a small tumor (2 cm) in her lung and the small-ish one in her brain, which was already resected. No other evidence of tumors. So, what I'm wondering is...we do hear these stories of people living 5, 6, 7, 8 years with this disease. Is the fact that she had such a limited spread actually good news, or am I kidding myself? Essentially, I know that the 2-year survival rate is like 5%, but I also know that by the time it's discovered most people have multiple tumors and metastatic sites. The doctors all said it was quite unusual to have just one small primary tumor with one small metastasis. Should I take it that her chances are better than average? For the people here who are long-term survivors or the stories you know of long-term survivors, did they also have a very limited spread?
  22. LaurenH

    Nina Beaty

    I was first diagnosed with small cell lung cancer (SCLC) in January of 2014 from a biopsy of the tumor that was sitting on top of my left lung. I had no symptoms I was ill yet I was urged by a radiologist who was a friend of the family to get an early lung cancer detection CT scan of the chest because I had been a smoker years before and grew up in a household of heavy smokers. So for me, it came as a total shock when I was told my diagnosis and “to get into the city for treatment, ASAP. “ For the next two years, I went through the standard treatment for limited stage SCLC, -chemo, radiation to the tumor, and prophylactic radiation to my brain. Good news, the tumor had shrunk but bad news, a new one had begun to grow in my abdomen. Now there was no option left for me except to go on an immunotherapy clinical trial, which I began in June 2015. I know I’m one of the lucky ones. I’ve survived over two years thanks to being enrolled in the clinical trial with the bonus of having virtually no side effects. I first heard about LUNGevity through my oncologist when he invited me to be one of his “patient-guests” at LUNGevity’s Gala in 2016. Encouraged by the speakers and to learn about more about LUNGevity’s focus on increasing the quality of life for cancer survivors and their caregivers, I contacted Katie Brown, LUNGevity’s Vice President of Support & Survivorship, to become a volunteer. I wanted to support other SCLC patients who were probably as confused and conflicted about their choices as I was when I was first diagnosed with this less common type of lung cancer. Katie gave me information about “LifeLine”, LUNGevity’s peer-to-peer support program that matches patients and caregivers to mentors with similar diagnoses. LifeLine mentors forge a personal connection by getting to know their mentee, offering words of encouragement, and by sharing aspects of their own cancer experiences. LUNGevity connected me to my first LifeLine mentee in early 2017. When I’m on the phone with mentees, I try to get a quick take on what that individual would like to get from speaking with me. I usually keep my personal saga with SCLC brief so the mentees have a chance to tell me what’s been on their mind. Sometimes, a particular part of their cancer situation is upsetting or causing frustration, while other times, they would just like to talk it out and have me listen. If I hear we have points in common, I’ll say something like “I get it. X-Y-Z happened to me, too!” Then I reassure them that they will get though it and find the solution that’s right for them. Some mentees just want a one-time chat to know someone else has survived the same illness. Others, who don’t have anyone they feel close to, might call me more frequently. One time I called Katie to get her advice on how to handle a situation that I felt was beyond my capacity to deal with. She was very understanding and together we came up with workable solution. So if you become a LifeLine mentor, don’t be afraid to reach out to the LUNGevity staff. They’re there to support you, too. The most rewarding thing about being a mentor is hearing someone newly diagnosed with SCLC say, ”Oh I’m so glad I talked to you. I feel like this is doable now. If you survived, maybe I can too.” Hope is the most precious gift I could ever offer somebody, which may sound a bit drippy, but it’s so true. I get to offer hope every time I tell my story that I have survived longer than I, or anyone else, would’ve believed possible. Photo credit: Ben Hider for the CURE Magazine
  23. Find A Cure Panel specializes in patient research for rare and serious disease and they have some current research for people and caregivers of people with Small Cell Lung Cancer (SCLC). To qualify for this research, you or your loved one with Small Cell Lung Cancer (SCLC): 1) Must have a diagnosis with Small Cell Lung Cancer (SCLC). 2) Be over 50 years old. 3) Have EXTENSIVE SCLC. Sometimes referred to as stage 3, stage 4 or metastatic SCLC. 4) Must have some experience with smoking. If you/your loved one NEVER SMOKED then you won’t qualify, unfortunately. 5) If you are a caregiver, you must be knowledgeable about your loved one’s condition and treatment. 6) If you are a caregiver who recently lost your loved one with SCLC, you can still participate if you lost your loved one in the last 12 months. It is easy to participate in. It’s one confidential and anonymous phone call with one moderator talking about your experience with Small Cell Lung Cancer (SCLC). If you are interested in participating, please contact FACP at [email protected] and reference FACP/SCLC
  24. Looking for small cell lung cancer survivor who quit chemo after having started. Please email [email protected]
  25. I promised I’d update, so here goes… My treatment is over, today. I’ve had 4 sessions of chemotherapy (over 3 months), 15 consecutive days of radio therapy, and 10 days of radio therapy to the brain as a preventative measure. The chemo sessions were severe, each lasted 10+ hours. The good news: My last scan showed a two-thirds reduction in tumour size - from 9cm down to 3cm. This is a fantastic result. I was only weeks away from death before treatment. Big thanks to my consultant - she delivered. And I even kept my hair, although its very patchy and not growing. But I’m afraid that is the end of the good news… Being only 55, and otherwise in excellent health, my consultant warned me she was going to nearly kill me to extend my life. And she wasn't joking. There is absolutely no way I would have been given, or would have survived, the harsh treatment I’ve received if I’d have been older, or with other conditions. Strangely, it wasn’t the chemo that flattened me. Before cancer I’d, like everyone else, known people with cancer, and the word chemotherapy frightened me. But in all honesty, it wasn’t too bad. A few days of nausea/lethargy after each treatment, then pretty much back to normal for 2 weeks. I got used to it. But the radio therapy, oh God the radio therapy. The only way to describe it is it’s a vicious monster that creeps up on you. The first ten sessions, again, went Ok. I really began to think I was pretty much getting away with all this cancer treatment. But then during the last five days, everything changed. I’d often wondered why cancer patients lost weight. Did the cancer stop them from eating or did they loose their appetite? In fact I asked my cancer specialist about this before treatment, and she was vague in her answer. Well the answer, for me anyway, is both. I’m 6’ tall, and normally weigh 12.5 stone. Whilst not skinny, I’m slim, and have little leeway for weight loss. Well, let me tell you, I’ve lost 2+ stone in just 6 weeks and I’m still loosing it. I’m genuinely in real danger of going sub-10 stone right now, and for a guy with my height, that’s skeletal. I just can’t eat. For someone who normally loves his food, not being able, or having the slightest interest in eating, anything, is horrible. The radio therapy has burned my insides and has severely narrowed my oesophagus. The acid reflux is horrific. Swallowing anything but iced water has been like swallowing pure acid. On top of that the radio therapy took away my appetite. Add to that the drug they gave me to counter the acid reflux didn’t work. It got so bad that after 2 weeks I admitted myself into hospital as an inpatient, was put on morphine to counter the pain, and was going downhill quite fast. Drips were being talked about, I was loosing. I don’t know where on earth I found the impetus, perhaps it was the ineptitude of the junior doctors/agency nurses who seemed to do nothing except rouse me every 2 hours day and night for mundane and pointless tests, that made me decide that if I’m going to die, I’d rather do it at home without the sleep deprivation torture. So I discharged myself from hospital. Cutting a very long story short, it wasn’t the cancer specialists that came to my rescue, but a lowly GP at my local practice who I’d never met before. After hearing my plight he said ‘I’m going to prescribe these; they are the Rolls-Royce of anti-acid drugs’. Word for word I replied ‘I hope so, because I’m loosing the battle here.’ It was true, and he could see it. Well, he was right. Within days the new tablets began to work. A month later the acid reflux had all but gone. The doc was my new hero, and is on my Christmas card list. The only reason I’m not eating at the moment is because the brain radio therapy has, again, stolen my appetite. But one battle at a time. So that’s how things stand today. 50+ trips to hospital. Hundreds of hours in traffic and in waiting rooms. Pain, pain, pain. 1000+ pills popped. Scores of needles and injections. Numerous scans, measurements, fittings, meetings and consultations. And a knackered relationship, although I think she’ll forgive me eventually. I’d love to end on a positive note, but as I lie here on the same settee for about the 100th day in a row, it’s hard to think of one. I have extended life, but I curse my survival instinct, and sometimes wish I’d bowed out with dignity before all this, because life right now isn’t a life. I said in my original (first) post that I wanted my old life back. Well I now know that’s impossible. I’m not the same person, and I know I never will be. But there is one constant to be had here… I will post again, and I hope next time from a happier prospective. Thanks very much for reading.
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