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  2. Hi, Carol, Welcome to LCSC. I am glad to see that you've already connected with so many of our members. This is a great community to ask questions and share your experience with other caregivers, patients/survivors, and advocates. Please let me know if you'd like to learn more about LUNGevity's programs and resources for caregivers and I will be happy to connect with you. We are here for you! With gratidue, Lauren -- Digital Community Manager LUNGevity Foundation
  3. Dear Kaly. Im so sorry to hear your brothers condition has gotten worse. I do know the fight is hard and it can completely wear you out. As far as squamous cell and chemo, it can work. My first diagnosis was taken care of with Cisplatin and Etoposide, along with radiation. Im sorry his oncologist won't consider radiation, at least for pain control. My prayers are with you both. Blessings, Michelle Sent from my SAMSUNG-SM-G890A using Tapatalk
  4. I just responded to your other post and asked you about your chemo cocktail - perhaps I should have looked more closely to see that you've provided that information. You should definitely tell your oncologist about the side effects; I recommend that you do so sooner rather than later. Docs can manage side effects so much better than in years past. You might also check out chemocare.com; it is a site maintained by the Cleveland Clinic and I've found it provides a lot of great information about the drugs and managing side effects. I'm currently on carboplatin and taxol but have not had the issues you mention. I still have some leftover effects from last spring's chemo but I'm managing them. I also have an anxiety disorder so I take one Xanax each day and I'm on an anti-depressant. I find that it keeps the panic at bay.
  5. Hi Charlotte. I'm glad you found this site; it has been the best support for me since my diagnosis last year. If you don't mind sharing, what chemo are you currently taking? Among the members of this forum, I'm sure some of us have taken the same therapy and might be able to give you some help dealing with side effects. Like Michelle, my cancer is also non-small cell, but we have a dedicated forum for small cell patients. Has your team indicated how long you'll take chemo, or what next steps would be? We're here for you so please let us know how we can support you.
  6. Hi, Laura, I am very sorry that you and your husband are going through this, but we are glad that you've joined this community. Please continue to post updates and feel free to ask questions. The more information you can share, the easier it will be for us to connect you to resources and people who may be able to help you navigate his diagnosis. With gratitude, Lauren -- Digital Community Manager LUNGevity Foundation
  7. Hi Charlotte, There are a lot of friendly and knowledgeable people here to answer your questions, talk when you need to, or just lend a shoulder to cry on. I don't have any knowledge of small cell lung cancer., mine is non-small cell. Im sure someone here can help you out. I just wanted to say welcome! Blessings, Michelle Sent from my SAMSUNG-SM-G890A using Tapatalk
  8. Today
  9. I just signed on to this forum and have a lot of reading to do to get to know each and everyone of you. I have a question regarding my chemo and some bothersome side effects. I take Decadron IV, Carboplatin, US Etopophos/toposar/vp-16, and aloxi 3 times a week every 3 weeks....well 1 is actually a shot I get only once a month. I just finished my 3 round and I noticed that after the second round my BP has dropped and my heart rate is elevated. I was going through my pcp who took me off my BP meds. I have had to go to the ER twice for lightheadedness/dizziness to get fluids. I now understand that chemo is dehydrating. I drink several bottles of water until I am sick to my stomach and water logged. I plan on talking to my oncologist my next visit to see if we need to change something. Is anyone else having a similiar problem? It is fustrating because I feel ok but have to lay on the couch or sit in front of the computer because I am too lightheaded to stand or walk. I also have panic/anxiety disorder and when my heart rate goes up I start to panic. Any suggestions?
  10. Hi my name is Charlotte and I was recently diagnosed in April with small cell lung cancer. In 2013 I had breast cancer but this is a new cancer not from the breast cancer. It came as a total shock to me and I think I still have the dear in the headlight look. In January I started not feeling well and went circles with my doctor until I decided on my own to go to the ER and try to get a lung x-ray. I did and it showed a large mass on the left with a deflated lung and 2 blood clots in the right. I was admitted. My oncologist came in the next day and scheduled me for a broncoscopy and other tests. Not sure all the terminology but I know it is small cell, it has spread out of the lung but not in any vital organs or brain. I was immediately started on chemotherapy 3 times a week. I am 62 years old, my children are grown and have over a dozen grandchildren. I live with a gentleman who is being very supportive in taking care of me, I just wish I could do more for myself. I did very well on the chemo for the breast cancer and thought this would be similiar but this one is getting extremely hard. I am glad I found this forum for support, I was in one for the other cancer and it got me through numerous long nights.
  11. If you have been diagnosed with NSCLC and would like to learn more about a marketing research study being conducted through Baltimore Research, please see the attached flyer. NSCLC Patients flyer.pdf
  12. Hi Everyone - Thanks so much for the good advice and the encouragement. We don't eat much meat, but we're tying to eliminate it with veggie soups and tofu (he hates tofu:)). Cindy - I'm not sure if your docs and ours are using the same scale. For us, his creatinine needs to be below 1.6 in order to continue with his Alimta (but above 1.27 is considered high). It was high last cycle, but with IV hydration it got below 1.6 so he could have an infusion in early June. Now, though, it's spiked up to 2.6, and has come down with hydration to 2.1. He's going to continue with IV hydration this week, and we're seeing our oncologist next week. They did ultra sound of his kidneys and bladder and a urinalysis and that was all normal. I know that people have taken a break from Alimta, which is scary, but that may be the best choice. He was on carboplatin/alimta for four cycles and now has been on Alimta every four weeks since January with no progression. How long was your treatment break? Hi Vivian - Yes, he took that Dexamethasone the day before his last infusion, but we've stopped the Decadron after. He had a lot more nausea, though, this time. Thanks, Tom, for the good advice. It sounds like a nephrologist is our next step. Thanks everyone for all the encouragement :)) It means a lot. Carol
  13. I am a two year survivor of a stage 4 gentic autoimmune liver disease. Although I am stable and in "good" health. I suffer from abdominal and muscular pain- rhumatoid arthritis and side effects from diabetes and Hashimotos thyroid disease. It's a lot- but it's manageable and I'm living very well with chronic disease. Before I was diagnosed- I was a high energy non-stop person. I didn't stop working until I had finished every last "to-do" on my list. I didn't have unfinished projects in my home and I always cleaned up after everyone else. I rarely slept! Now, I still do that, but I'm a little slower. My body hurts during and afterwards.I also have a different kind of urgency that I didn't realize I had until my husband called me out the other day. Husband: "Go lay down! You have to stop lifting and moving and you need to just rest." Me: "I can't rest. I have so much to do." Husband: "You'll get it done later." Then my fear hit me smack in the face: What if I'm not here later? Who is going to do it? Now listen, I plan to be around for many years. The reality is, I am here now, but the fear of death and my family losing me, however deeply hidden, is real. How do you deal with your reality and fears?
  14. Thank you so much- he was sick with the IPF but we were still traveling( on oxygen). During the month of May his shortness of breath increased and he had trouble walking. On Fathers Day we were in Ma. For a wedding when he got a sharp pain in his chest. We rushed to the hospital thinking it was heart. Three doctors came in and said " your heart is good"- momentary grins exchanged/ but... there are two huge masses on your CT- you definitely have lung cancer. Since that day pain has increased, hospice is in control and we are looking at the will etc- awful
  15. Steff, Was your mother's current cancer biopsied? if so, ensure the biopsy sample is tested for biomarkers. There have been many advances in treating certain forms of non small cell adenocarcinoma and these are the emergence of targeted therapy treatments. Read about targeted therapy here. It might be time for your mom to see a medical oncologist for development of a treatment plan. Stay the course. Tom
  16. Sandrine, Recommending or endorsing specific health care providers is something we do not do on this forum. But, you can Google "US Hospitals Specialize Lung Transplant" and read the results. I'd start with websites that are not hospitals like, for example US News "Best Hospitals for Pulmonology" and Becker's Hospital Review. I hope this search approach gives you ideas to consider. Stay the course. Tom
  17. Kaly, The sputum symptom is not good and you are right to feel devastated. It is very hard for me to suggest treatment ideas because I'm not informed about India's lung cancer treatment protocols. Did he inquire about immunotherapy and his last oncology consultation? Might it be possible to ask for a different pain killer that would not upset his stomach? Stay the course. Tom
  18. Laura, I am so very sorry to learn of your husband's diagnosis. Pulmonary fibrosis is one of those diseases where symptoms can only be moderated. Has he displayed symptoms (shortness of breath) over a period of time or did all this happen suddenly? My wife and I planned hospice care for me when my lung cancer resisted fourth line treatment. After meeting with the hospice doctor and nurses, we concluded if our last treatment alternative failed, we'd enter hospice care. We were convinced that was far better than hospitalization. Nothing I can write can comfort you and having faced this situation myself, I can say, unfortunately, I know what your husband is feeling. I wish I had a magic wand and could wave away his disease. You are welcome to stay connected with us if it gives you comfort. While we don't have a lot of expertise in pulmonary fibrosis, many of the symptoms are common with lung cancer and we might offer you some assistance and comfort. Stay the course. Tom
  19. Thank you- no because he has pulmonary fibrosis there is no treatment- hospice has been amazing at our home but we are floored
  20. Laura So very sorry that you and your husband have received such awful news. Have they given you any options for treatment? I will include you in our prayers each day. JWH also new to this site Lungevity, lots of great information here, as well as wonderful support, as so many are dealing with similar situations.
  21. Thank you Susan and Tom. New thing in my brothers case is he spit up 2 small size hard sputum( its like blackberry size lumps) early in the morning yesterday and today. Does it mean he is in terminal stage? He is going through so much pain , he is taking pain killers which is causing stomach upset. I am not with him to help him but when he tells me over the phone the pain he is going through I feel devastated. Usually he is a brave person until last week he was like I am going to kick this off but last two days he is telling I am giving up can't fight anymore. Very drastic change within a week. Thanks Kaly
  22. Last Sunday we went to the ER as my husband had chest pain. They said his heart was fine but he had huge masses on his lungs. He was admitted for three days but sent home with Hospice " to make him comfortable." The pain in his upper back is bad. Now there's oxygen, a hospital bed and a wheelchair in our living room and we can't believe how fast things are happening-
  23. Carol, Hang in there... My husband was diagnosed July 2014 stage IV. I couldn't remember much about Alimta as he has been on several medicines, so I looked it up. It says he is supposed to get Dexamethasone aka Decadron the day before, the day of and the day after. Boy do I remember that causes sky high blood glucose numbers and I think it can cause high creatinine numbers. Your husband probably needs to see an endocrinologist, if he wasn't diabetic before he may be now. The good news, it can all be managed. Don't be scared to ask questions or to call or my chart message his doctors. No reason to wait for next appointment to get answers you need. Take care, Vivian Sent from my iPhone using Tapatalk
  24. Hi Sarah, II was home with a chest tube too,after VATS.I also had an air leak. I had the tube about 10 days at home. I ended up in the ER on Thanksgiving day because the tube clogged and was leaking a lot of fluid into my dressing. It could have been dealt with in an office visit, but of course everything was closed for the holiday, so ithe ER it was. At that point the air leak was resolved enough to take out the tube. I was MUCH more comfortable with it out, no big surprise. So hang in there, it will get better soon. I'll be thinking of you and your tube. I recommend sleeping on a towel or chux pad in case of unexpected tube failure. Bridget
  25. Carol, Welcome here. For encouragement, if I can live, so can your husband. My wife has a masters degree in nutrition and is an RN. She says for diet: reduce meat consumption because creatinine results from breaking down proteins. And a consultation with a Nephrologist is the right next step. Stay the course. Tom
  26. Sarah, Home with a chest tube? Done that. I had trouble finding a comfortable position to sleep because the chest tube was in my lower back. I finally needed to wedge myself on my side with pillows to ensure I didn't roll on my back. I know you are going to take it easy and give yourself time to heal. Good to hear of your successful surgery. Stay the course. Tom
  27. Yesterday
  28. Just got home from the hospital. So fortunate that they were able to do the VATS surgery. Still, hard but doable. Had to come home with a portable device for the chest tube. I have a small air leak that is taking time to close up. Glad to be home and out of the hospital. Now, it will take time to get used to being down 2 sections of lung. Will work on my breathing and losing the extra weight so it will be easy to breathe. I won't know what they staged it at for a few more days. I can wait. Thanks for all of the kind thoughts and prayers. You were all with me. Sarah
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