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Tom Galli

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Everything posted by Tom Galli

  1. Clinical trials

    Josh, So glad to here about the non side-effects. I really, really hope the chemo has an effect. Stay the course. Tom
  2. Need advice, experience, something!

    Aljames, Ok, you’ve got the self-infused version of Neulasta. I had to go back to the clinic 24 hours after each infusion for a blood draw that would show - low red and white counts. Then, I’d get Neulasta and Procrit shots. Sorry about the 27 hour mixup, and the multilingual instructions are a pain! Surprised nurses would miss that detail. If the practice is using auto-infused techniques to address common side-effects, it is a pretty squared away practice. Maybe you need to have a face-to-face sit down with the head of the practice or clinic and convey your dissatisfaction. Are you getting your treatment through Johns Hopkins? Finding metastasis in one or several lymph nodes could easily be a complicating factor, especially for the radio oncologist. Perhaps he’s withholding conventional radiation to use modern precision techniques to fry a future metastatic node. He ought to have an explanation. But, I bet it is a reluctance to radiate because of the healing complication so close to surgery. I was stage IIIB and had surgery after I had pre-surgical radiation and chemotherapy. The surgery was successful but the healing difficulties caused two more thoracic surgeries and 4 surgical stent procedures. Glad you found us. We are here to help. Don’t be shy about asking questions. Stay the course. Tom
  3. Need advice, experience, something!

    Aljames, Welcome here. Tim's characterization of our disease is spot on. Lung cancer is complicated. I'm assuming your husband had surgery and his right lower lobe and 10 lymph nodes were removed. I'm also assuming the surgeon found more cancer that expected during the surgery and did not remove everything found. Could you clarify these points? I'll continue assuming he's had surgery. There is nothing normal about lung cancer, but post surgical chemotherapy is pretty common for stage 3 disease. If however, the surgery revealed more cancer than anticipated, then the medical oncologist may believe first line treatment is called for. First line treatment normally consists of daily radiation for about 30 days and weekly chemotherapy. But, your husband's radiation oncologist might believe withholding radiation is necessary to avoid complicating post surgical healing. Radiation can be given after chemo so that is not a problem. My survival experience points to problems radiation can cause to tissue and suture healing. I don't understand your comment about Neulasta. It is an injected drug that has a well recognized long bone pain side effect. Did your husband's medical practice require you to give the injection or did they not tell you about the pain side effect caused by the drug? During my chemotherapy, I normally saw my medical oncologist before or immediately after my third infusion. I also saw him after each scan. In fact, explaining the results of these in-treatment scans is a very important consultation. If his third infusion was on 2/8 and you saw the oncologist after that infusion, then the timing appears to be OK. I'm not sure that the oncologist is effectively communicating from your post, but the schedule of consultations seems to line up with mine. I found my chemo nurses to be a very effective resource during my chemotherapy. My wife was calling them all the time about side-effects and strange symptoms. They gave good explanations and even consulted with the oncologist to have drugs ordered to combat a problem. Use the oncology nurses as a resource. Unfortunately, bibasilar infiltrates (lung congestion, pneumonia and the like) and plural effusions are relatively common during lung cancer treatment. Using an x-ray is a common way to check on the extent of the plural effusion. Did the doctors remove the effusion fluid? I'd call the oncology nurses and let them know about the emergency room visit and tell them if the effusion fluid was removed. If so, they may have the fluid biopsied. You do need to keep an eye out for his plural effusion condition. If he runs a fever and has difficulty breathing or if breathing becomes painful, get him to the ER quickly. And, call the oncology nurses and let them know what is going on. Doctors are important but if they don't adequately answer your questions or get in your face, I'd be finding another doctor. You pay for their services and if you are not satisfied, take your business elsewhere. Did your family practice doctor refer you to the medical oncologist? If so, I'd tell him or her about the oncologist poor patient communication skills. If not, I'd ask your family practice physician for another medical oncologist. You've got us now to help so if you have questions, fire away. Stay the course. Tom
  4. Cancerversary

    February 22,1019 -- 3 toes! Marked it on my calendar. Stay the course Susan..... Tom