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Everything posted by JCM

  1. Hello Fellow warriors, Are any of you living with MPE? I am accumulating fluid and had it drained once. It is back and I am getting a second opinion. I am receiving palliative chemotherapy along with Keytruda for stage 4 cancer. I read that prognosis for pleural effusion that’s malignant is 3-12 months. That’s a scary thought. Has anyone had a different experience? I would appreciate any feedback.... thanks! Jane
  2. From what I’ve read, the evidence for malignant pleural effusion has a very poor prognosis associated with it, 3-12 months. Has anyone here had a different experience I might find encouraging? Unless I’m mistaken, it does appear to be a death sentence. JCM
  3. Has anyone had fluid removed from their lung for pleural effusion due to lung cancer that has spread beyond the chest wall? Did it help?
  4. JCM


    I would ask for a CT scan to make sure it is helping and not making matters worse. My doctor has offered that after two rounds but you might have to ask.
  5. JCM

    Worsening Cough

    I am a stage IV patient with an unrelenting cough that has not eased or been explained by my medical team since I was diagnosed in March 2018. I have had chemoradiation and then surgery to remove my right upper lobe and part of my middle lobe. Immediately following surgery, new pulmonary nodules were seen on the right side and left pulmonary nodules remained stable or mildly increased. They were too small to be biopsied or seen on a PET until they reached 9mm. There is now widespread cancer in both lungs. I am being treated with carboplatin/alimpta/Keytruda even though my PD-L1 levels are less than 1%. I also have a pleural fluid metastasis on the right side. My team does not feel the fluid is large enough to be causing the coughing I am having. I have seen a pulmonologist and he has me on the inhaler Symbicort. For the gut wrenching cough that has me keeled over I use cough syrup with codeine every 3 hours. It is the only thing that works. My back is the only area where I feel pain and it’s pretty minimal. No one can explain the cough. Has anyone had experience or known someone for whom the cough ultimately explained itself? There is currently no PET evidence of metastasis in brain or bones, but as we all know, it doesn’t mean the sneaky cancer cells are not there. But isn’t there a possibility that the cough is in and of itself a tumor in the back that could be pressing on nerves of the spine that could eventually be expressed that way? Overall, I’m wonderful if any of you have the mystery of a long term cough that can’t be related to anything specific unless or until it implodes in some way? I don’t know if I am explaining myself at all. I’m struggling to find answers and I know there is a wealth of experience out there! Thank you....Jane
  6. Does anyone know of lung cancer support groups in the Boston area? I am only aware of groups for patients with breast cancer.. Jane CM
  7. Steff (and others), Has anyone had success being treated with Keytruda in the absence of any biomarkers that support having it for treatment. My 3B cancer just change to IV because bilateral, multiple nodules are growing. I have no targeted mutations for treatment. I’ve already had chemo radiation followed by a right upper lobectomy and wedge resection of middle lobe. New nodules appeared at the first post surgical scan. But they were small and grew ever so lightly. Now at 9mm it’s time for action. Has anyone had a combination of chemo/immunotherapy at this junction? Jane CM
  8. Of course a patient with cancer is anxious but that has nothing to do with it! I have worried that my well documented history of anxiety would muddy the waters and it has. Stand your ground! This is physiological- and yes, there is an emotional component but why wouldn’t there be? This should not be used against a patient with cancer. It is hard enough to deal without the added pressure of having to suppress natural, situational feelings! I’m so sorry 😐 you have to go through this.
  9. I don’t feel I can call myself a survivor because I’m still being actively surveyed every 8 weeks for slightly enlarging nodules that can be the result of inflammation vs. recurrence at stage 3B following lobectomy and prior chemo/radiation. I think about the possibility of dying so much that I cannot think of myself as a survivor. If I’m fortunate enough to get an NED diagnosis I will feel like a survivor...even if it comes back. I wish I could get back my positive attitude but I’m feeling a bit weary at this point. I hope it’s okay to not express 100 percent positivity on this site. ❤️ Jane CM
  10. Esophagitis update: Met with radonc today and he said it was very unusual for me to have this lingering 4 months post radiation. His reasoning is mine was a low dose radiation because it was presurgical in the plan. He was very surprised that I’m still having trouble swallowing and coughing when trying to eat solid food. What he suggested is an upper endoscopy to get a look at what is going on. I just have to figure out how to fit it in since next week is my PFT and follow up with pulmonologist and the following week a CT chest and abdominal/pelvic scan. I am on active surveillance for a possible recurrence because of new enlarging nodules that are small but growing - largest is 6mm. My pulmonologist thinks they might be inflammatory and if there’s an inflammatory response going on in my esophagus and I’m coughing my brains out, well maybe those nodules are not cancerous. If they are it represents metastasis - cancer that has entered my bloodstream. Fingers crossed they’re due to inflammation! Trying to stay positive but also feel compelled to prepare for worst. Not easy to balance these opposing but authentic emotions. jane
  11. Thank you both for your replies. I am meeting with the radiation onc tomorrow to discuss and will keep you posted. Jane
  12. How long does it take the esophagus and lung tissues to heal following radiation? Has anyone found that they cough deeply after eating, feel swollen in middle of chest where food passes and is still having swallowing type issues several months after radiation? I would be grateful to hear the experiences of others and how long coughing lasted, digestive issues, etc and if this has been permanent for anyone? And if you have tips to pass on when eating and coughing issues persist for several months?
  13. Thanks, Steff. It’s so good to be able to ask these questions because someone always has an answer...or two...or three! 😎
  14. I discussed my distress over waiting almost a week and my oncologist is allowing me to schedule my CT scans for the day before I see her. A report is different than looking at the images which is so much more informative and I’ve been misled when I only see a report. This will make my life so much easier! It does not hurt to ask..my oncologist is super busy but very warm and accommodating so I’m very fortunate.
  15. Katum, I am inspired by your words. Especially that “giving up isn’t an option.” I feel terrible for your mom and what she is going through. I also think of my own daughter who is having to go through what you are experiencing by having a mom sick with lung cancer. I agree that symptomatic relief (palliative care) is most important. I take cough medicine with a codeine and that calms my coughing symptoms at night and allows me to rest. If I take it during the day it would make me sleepy but if I was suffering as much as your mom I would do it. I hope if I get to the point where I want to be out of pain and go peacefully that my family will support me and let me go. My worst fear about dying is leaving my daughter if I decide that enough is enough. Sending prayers to all of you, Jane (JCM)
  16. Thanks, Tom. I always feel better when I hear from you! Yes, too small to be seen on PET. I’m having an abdominal/pelvic CT in addition to CT chest the next time around. I forgot to ask why! Are there lymph nodes down there that can’t be seen on CT chest scan? Adrenal glands seem fine. Liver is okay. Any idea what they might be scouting for? Trying to stay the course and fight the good fight and mostly I can do that but this weekend I just feel like napping and cuddling with my furry companion dog.
  17. Hello my friends and fellow warriors, I had surgery on July 3 and at the scan 8 weeks later, small nodules 2mm appeared on the right lung where I’d had an upper lobe lobectomy and middle lobe resection. 8 weeks later they’ve grown slightly - no bigger than 6mm. My oncologist is talking possible recurrence but too early to tell so another scan in 8 weeks. On the other hand, my surgeon suggests they might be the result of inflammation and that she has seen these go away. I’m confused and scared because if it’s a recurrence I am stage IV with no targetable mutations. My oncologist will be recommending a combination of chemo and immunotherapy. Two guestions: 1. Has anyone had post surgical nodules go away, and 2. Has anyone had a post surgical protocol that combined chemotherapy and immunotherapy? I am feeling depressed and without hope and will be seeing a psychologist soon. I hope that will help. I think about dying a lot.
  18. It seems there is little to no evidence to support that chemoradiation followed by lobectomy and then more chemotherapy is beneficial. It’s both the BEFORE and AFTER surgery that’s been studied. As a patient I’m told I am in a gray area and that it’s pretty much up to me to decide this. I started out at Stage 3B with two tumors and mediastinal lymph node(s) involvement. I had chemo radiation to shrink tumors/lymph nodes followed by a lobectomy in right upper lung and wedge resection in right middle. I now have small but growing cancerous nodules in that same lung 3 months later. I can wait for a clinical trial getting regular scans or go ahead with chemo. Is there anyone who has done this level of treatment? How did it work out? I fear I am the only one around that has done this whole protocol!
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