On June 25th my anniversary I was diagnosed with stage 4 non small cell lung cancer. It is in my lung and lining and now the think my liver. I'm doing Keytruda. Anyone have some advise?
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Hi all, i dont knwo where to start really, i will start from Nov 30, 2017, that day i had a biopsy done to me in Luxemburgo, a lung needle biopsy, and the results came on Dec the 5th, as Cryptococcosis, and i started my treatment with Fluconazol 400mg/day, then i went down to 200mg/day, cause 400mg was too much for me...then last year in July i came to Spain, and that is from where i am writing now...here, i ve got an especialist and a GP, my especialist continues treating me for "pulmonar cryptococcosis" with Fluconazol, and i ve had my last CT- Thorax-Abd-Pelvic Scanner done here last Nov the 16th of 2018....it showed nodulation on both lower lobe lungs, and biggest nodule of 7mm...but the CT-Scan is so ambigous, doesnt especify much in my opinion, cause i remember that in Luxembourg they were more precise in the writing of the CT reports.... Anyways, getting to the point, as my teache used to say, latelly i am feeling sick almost everyday, i have gone many times to ER here, they only do an ElectroC, and then i go home...i feel ill lately; i feel breathless, heartpain, backpain, dizzines and some times a little confuse, also i feel that my tongue gets dry latelly, and i have to drink water and even keep some water in my mouth, so that it doesnt dry. Moreover, i have focused on the blood work, i have done 5 or so tumor markers, and they all came within the normal, something that came positive was, TSH 5.3 (Thyroides) and free T4 1.01 ng/l, i think i am considered as subclinical hipotiroidism now. Also i tested positive for a Virus calle megalovirus...so my life switches on thinking that i have cancer to hypotiroidism, i dont know what to do. However, i will do more blood work next Monday the 28th of Jan. Please am writing this, so that, some people in some place help me to find my real diagnosis, whatever it is, knowing is better, Sincerely ChaviI'm having surgery tomarrow and looking forward to moving forward.Mine is a success story but before success, I had to go through failures. I have cancer and it's been several years and I have tried several means to treat my condition. Chemotherapy – I’ve gone through these several times but it failed. Then I had to go for something different. There were news from books, documents and even the experts about take this for cancer or that for cancer. I've tried all kinds of stuff like turmeric, taheebo, essiac tea formula, soursop, red clover & some Ayurvedic herbs like neem. Also got into amygdalin and apricot seeds and even more. Mushrooms - medicinal mushrooms are always good & known to boost the Immune system. I believe in herbs and believe the herbs and other treatments kept me alive. And special mention to Chinese herbs like milkvetch known as Astragalus membraneus, artemisin and LingZhi mushroom. In fact, Chinese herbs & Chinese herb shops are something worth becoming familiar since they have been in the herb business all their lives. All acupuncturists seem to be also Chinese herb specialist since acupuncture and herbs go together in treating many kinds of illnesses. I visited one and he gave a prescription paper written all in Chinese characters and I went straight to the herb shops and suddenly become familiar with how the raw herbs actually look and smell. I remember going to the library borrowing a Chinese herb book and looking over the chapter that dealt with herbs for cancer. One day I read about dried aconite and one of its uses was for cancer. However, aconite is poison but the Chinese book explained that this kind of aconite has been treated and cured twice and WEstern herbalist will not use raw aconite since the poison is a problem but the Chinese herb is as explained in the book, has been treated & has been transformed & less toxic as the raw herb, about one tenth lower in toxicity making it safer for use. When I talked to a Chinese herb shop employee and asked if he knew the dose for this treated aconite - it was strange because I expected him to tell me the dose by weight, instead what the man did was get a few bits of them into the palm of his hand without weighing it and said that is the adult dose enough for me. Even today, I still don't know the dose for that stuff. Now we cancer patients are always looking & searching for what works and news of something new can bring us hopes and perhaps even a cure for our cancer. And there was better news regarding this unknown herb- Thunder God vine. There was good news and bad news. The good was it seemed to be more effective than any herb ever. The bad was it was not available , if you wanted it, you would have to get it from China.but not in U.S.A. But time goes by, time does change things and with time eventually Thunder god vine became available and it could be through the internet and maybe some shops but important is it was available at present. I’ve seen many in bottles which are capsules with a ratio of 5:1 and another with 20:1 meaning these came as extract which were 5:1 was concentrated with a strength of 5 times & the 20:1 has the strength of 20 times the dried herb. I bought it but once I started to open it, realized there was nothing in the bottle that stated the dose. In fact, placing a call to the retailer, I found they did not know the dose and more the manufacturer did not have that info either. So the stuff stood there on the table but I could not take something without knowing how to take it. I visited the Chinese shops again but it was not what I wanted or needed because the Chinese specialist used Lei gong teng ( the chinese name) herb was prescribed for arthritis and immune problems but never for cancer . The Chinese did not know Thunder god vine could treat cancer, it was Western research that discovered it heals cancers. Some years did pass and I was reviewing something totally different when looking at the internet, there was something about Thunder god vine again. I just scanned it but one thing hit me, bang, this was about treating cancer with Thunder God vine and combining that with chemotherapy and they had a treatment including the dose , wow, these was news again. This company was different, they had all the info for the patient – the doses for both chemo drug and the thundergod vine herb including a schedule, these people really know their business and stuff. This was from a supplier company & explained in their website that to use Tripterigium or Thundergod vine alone to treat cancer posed a problem because the dose would be just below the toxic dose and that meant there was still danger since being just below the toxic dose could result in people taking the toxic dose (margin of safety is a problem) However, a discovery by a Dr. Rosen was a better solution using a combination of Thundergod and chemo drugs. The Thunder vine had the ability to increase the effectiveness of chemo drugs which translate into both vine & chemo could be taken at a fraction of their original effective dose when taken alone which solved the toxicity for both vine & chemo. The rest of this is the company sends only the Thundergod in capsules and I arranged to get chemo again with my doctor. But I followed the dosage and schedule as provided by the supplier of Thundergod vine. Time passed by & I am cured but people would have to read the website of this company and decide for themselves if they want it. The company website is http://follownaturesway.net/cancer-therapy.html I should state when someone writes about their experience, it is a story and can be read by anyone. But it is the duty of people to not just read a story but make a decision for themselves. Not even doctors make guarantees about the medicines they prescribe, in the same vein, this company make no guarantees either. But this is how I got healed!!! I will not say this will heal others. But if people who have tried chemo experience failure, it is chemo resistance. Search modern medicine, what do they offer for chemo resistance? They have nothing. My duty is to tell my story, give my experience and testimony and point the way for cancer people who feel they have no more options.For some, starting conversations regarding end of life care can be very difficult. When is the right time to start that conversation? Who do we start the conversation with? What are the next steps after a conversation? Hearing about others experience with these talks can be super helpful. Share your thoughts or ask a question or two below!I'm afraid to start chemo. I don't want to loose all my hair. Ok, I'm already bald, but still...We were incredibly saddened to hear of the passing of LungCancer.net contributor Jeffrey Poehlmann on October 21, 2018. Jeffrey had been living with stage IV lung cancer for the past 4 years and was an active advocate, sharing so much of his journey with the community. He will be remembered and missed by all who knew him, and all who read his writings. Read more about Jeffrey here and join us in remembering him by sharing any memories below.Have really bad odema in feet and hands. Due to tumour. Any ideas of what can help.Alternative medicine are more accepted now a days due to it's promising results unlike pharmaceutical medicine, alternative medicine don't give negative effect such as kidney and liver problems when it comes to long term use. As for my alternative medicine usage, I use medical marijuana. Different strain has a variety of uses and effect depending on your needs. Like this marijuana strain http://www.ilovegrowingmarijuana.com/blueberry/. This strain has a very potent effect on chronic pains like back pain and joint pain and a lot more.Hello all. I have just finished chemo and radiation for NSCLC Stage III adenocarcinoma. I have been told the tumor did shrink and I responded well to the treatments. The doctor is going to start me on Immunotherapy for 6 months. My biopsy was not tested for DNA, etc, so I wonder how he would know which Immunotherapy to give me. Is there anyone out there that has had a similar experience? I would like to learn from others who have lung cancer what you know.I had no sign or symptoms prior . Then woke up to my eye twitching on lasted a minute or so . Happened one more time so I went to ER. Took some test then when getting ready for CT I had twitching of the eye again and the nurse put me in s bed and started me on seizure meds. I was immediately taken for CT . In an hour or so I had a brain surgeon and oncologist at my bed . Surgeon said I had a tumor on the right side in my brain that had traveled from my lung . Oncolologist told me I had lung cancer . Surgeon said had to be removed the next morning and that I was lucky I only had two small seizures . That I could have had a massive seizure and would may have to learn how to talk walk again . So I had surgery the tumor was close to the outer brain they said the rest of the brain showed no cancer. I was out on steroids for inflamation and was out of ICU after one evening and wasn't incubated after surgery . About one month of recovering from brain surgery I started 6 treatments of a very strong Chemo and also another plus keytruda. I had a Ct after 3rd treatment and tumor shrunk and shrunk again after the 6 th treatment . I was then taken off the strongest Chemo they said that Chemo would not do anymore after the 6 treatment . So no I'm on 1 Chemo and keytruda with one y last treatment tomorrow for now because Dr wants a CT in 2 weeks or so to see where we stand. I forgot to mention that they found a small amount also spread to my clavicle bone and tats why I was diagnose as stage 3 . Also had a small dose of radiation to my brain in the beginning and have had 2 MRI since then they both showed no sign of anything growing in the brain . Scheduled for another MRI for brain end of August. I'm so scared to have the next CT in two weeks . I can't stop thinking what it will show and what the next step will be for me. Ugh Sorry such a long text.I am so blessed to have been diagnosed with stage one lung cancer in January 2017. I had VATS in February 2017 to remove my lower right lobe and a resection of the middle right lobe. I have scans every six months which have been NED so far. My cancer was high grade Primary Pulmonary Mucoepidermoid Carcinoma, which is less than 1% of all lung cancers. I am looking for other patients diagnosed with this rare cancer. I would appreciate any responses.Good evening. I only just joined this website, and this is my first share. I am very interested to hear from other members who may also have been diagnosed with small cell lung cancer, their journey and treatment options. I was diagnosed last September, end stage, with mets to both liver and bones and recently with brain tumors as well. Ever since the new development of the brain involvement, I have gone down hill fast. It affects my balance and walking. Now trying to regain my strength after brain radiation, and it's very slow going. I would love some feedback from fellow small cell survivors. Sincerely karla54I'm newly diagnosed and petrified of my upcoming surgery. The drainage tube seems to be the worst culprit. When I had my biopsi that was the only real pain I had. My surgeon will remove two lobes the top and middle on my right lung. As I said I'm petrified. I have 11grandchildren, three children and there spouses. I have a wonderful husband. I'm not ready to leave so I have to do this. Of coarse knowing I have to do this doesn't make it any easier. Thank u for listening.We were incredibly saddened to hear of the passing of LungCancer.net contributor Nicole Russell on Friday, February 16. In addition to being a loving mother, wife, daughter, friend, and military veteran, Nicole was a wonderful lung cancer advocate and an incredible person. Her writing, advocacy efforts, and overall kindness have reached and impacted many; she will be missed. Read more about Nicole here and please feel free to join us in remembering Nicole.Hi- I just joined this site so that I can be in touch with other people who have or had lung cancer. Two of my friends who had lung cancer are gone now. I've had lung cancer for 20 years and thought that I should share my story on a blog, https://www.my20yearscancer.com/. I've had 2 surgeries, chemotherapy and two types of radiation: Proton and Photon. I am currently one week away from my first follow-up CT scan for my last cancer that was in October. That was taken care of (I hope) by Photon Radiation. There has been no staging done on my last 2 cancers. They have been to difficult to access. Except for my first cancer I have multifocal adenocarcinoma of the lung. I really hope that I can connect with people. My husband has been a wonderful, supportive care taker but I'd love to connect with people who know what I feel and what it's like to have lung cancer. Thank youMy Mom, who is 81, was diagnosed with lung cancer in August. She had 10 treatments of radiation. We had a pet scan in early December. The docs said the cancer was non-aggressive and we should just enjoy time. But then Mom started getting weak. We did not realize until January but she was having fluid on her lungs and on her heart.. She had that drained. We had to wait 6 weeks after the surgery for a pet scan to check on the cancer. Now it seems to have exploded. We had the pet scan and then went to the stat clinic. We got told that the cancer has spread to the liver, more lymph nodes and more of the lung. Basically they said she was terminal to go home and call hospice. It just seemed so crazy that it just exploded. Has anyone else had this same thing? I was dumb foundedActually, I have two questions. Why are all of the posts indicated as being done so long ago? Is this not an active site? Some of the subjects are over 10 months old with no activity since. But actually, I want to know why the site has not pushed on Medicare and the insurance companies to approve folding power chairs. I have bought a folding power chair (I will name the company to those interested) but without any financial help from Medicare or insurance (Humana) because they consider the chair a "recorational vehicle". It is anything BUT. My caregiver (my wife) and I are both 84 years old and cannot handle a chair that weighs 80+ pounds. The chair I bought weighs only 41 pounds (then you add the 12 pounds of batteries). It folds to put in the trunk of the car, and will go 10 miles on each of the two batteries. It is a life saver for someone with emphysema and a short garage. Has any research been done for those of us with Lung Cancer on mobility? Does anyone even care?I’ve been on Tarceva almost 2 years. I’ve had some weird side effects - from head to toe - literally. I’ve had a yearlong battle with an infection in my toenail to rash and sores on my head. I’ve heard people who have rashes have better cancer fighting results. Is that true if you?I am to try this Chemo drug. Has anyone ever tried it? I am worried about chemo brain fog which I had with past chemo drug Alimta. It was terrible. I didn't think I was going to make it. Matter of fact if there was any other option to keep me alive, I would take it. However I don't qualify for immunotherapy, done all the radiation, surgery not an option, tried different pills but couldn't tolerate them. Any information would help. Thanks.
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