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Denzie

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Everything posted by Denzie

  1. Denzie

    Traveling

    I've traveled by plane cross country 2x and to Europe 2x post VATS and not had any problems. Sent from my iPhone using Tapatalk
  2. At stage 3, depending on the location and Tumor properties, they will treat the patient with curative intent. Please know that it's alright to be frightened for your mom. Own your feelings, that makes them easier to deal with. Your mom is your mom and I bet she's able to read the fear in you. It's okay to let her know that you are afraid but that you will take strength from knowing that she is dealing with this so well. Contact the oncology social worker at her hospital. Inquire about support groups for family and friends. My experience in family support groups and now in patient support groups is that there is more laughter than tears and you learn how to help her enjoy good quality of life. Learn the signs of dehydration (confusion, stumbling, dizziness blurred vision, skin that stays tented when gently pinched. Pulmonary embolisms and pleural effusion may or may not cause sharp pain accompanied by shortness of breath and faster heartbeat. The pain may be referred-it doesn't have to be on the same side as the lung cancer. Watch for unusual swelling in her legs that might indicate blood clots that can break loose and cause heart attack, stroke or pulmonary embolism. If you see any of those symptoms call her dr immediately. Get her up for short walks or swim. Exercise is important. Calories are more important than balanced diet during treatment. Make smoothies or milk shakes with ensure or boost to get the nutrition she needs. Hope this helps. Sent from my iPhone using Tapatalk
  3. Let me add that MD Anderson has support groups for patients and additional support groups for care givers. It's very empowering to sit with a group of people who know what it's like to hear the words, "You have cancer". Having been part of both survivor and care giver groups I can assure you that we laugh more than we cry. https://www.mdanderson.org/patients-family/diagnosis-treatment/patient-support/support-groups.html Sent from my iPhone using Tapatalk
  4. Because you quit smoking so long ago there is a chance that your cancer has a targetable mutation. Have you received the results of the mutation testing yet? A targetable mutation means that your cancer can be treated with a pill rather than standard chemotherapies. Lungevity has several booklets that discuss each and their possible treatments. When you know more send them a request for one. Sent from my iPhone using Tapatalk
  5. He's lucky to have you as part of his care team. You seem to be an amazing advocate. I wish more patients had someone like you in their corner. The manufacturers of the medications your uncle has been offered may have programs that help with payment. When I was treated my chemo had to be postponed 2x because of my blood count. I waited an extra week and then wound up needing transfusions before we go go forward with treatment. That necessitated a couple extra visits to the hospital for blood tests and long days in the short stay unit while two units of blood were prepped and thawed. Time spent researching payment assistance would be well worth the effort. Talk to the oncology social worker at your hospital. They should be willing to help with this. Sent from my iPhone using Tapatalk
  6. Seconding everything Tom said! So very sorry your dad had this complication but grateful that his surgeon was so sharp and observative. With your family history of heart disease you know that your dad can enjoy many more years of productive life with great quality following that bypass. As awful as this is, it's a mixed blessing. Lung cancer rarely manifests symptoms until it has invaded other organs. This diagnosis comes at a time that it can be cured. Sent from my iPhone using Tapatalk
  7. Denzie

    Small cell

    My friends husband was diagnosed at age 65. He lived for 7.5 years after chemo, radiation and PCI (prophylactic cranial irradiation). He died of causes not related to his cancer or treatment. Sent from my iPhone using Tapatalk
  8. Welcome. You will meet many through Lungevity who experience the same EGFR mutation. They even have a Facebook group- private- for EGFR patients and survivors. You've landed onto one of the most supportive sights anywhere. Buckeye-wife, are you still in Ohio? Lungevity will be sponsoring a Regional Hope Summit in Columbus. It's an educational and social event. Please consider joining us. I think it's in November. There will be more info on the website. Sent from my iPhone using Tapatalk
  9. Denzie

    Question?

    This is something you should call the dr about. He will be given steroids as part of the side effects management and this is something he can't do without. It may take a few infusions before they have an adverse effect but don't chance it. Your dr would rather hear from you before it becomes a problem. Do ask for a referral for an evaluation with the oncology nutritionist. Concurrent chemo and radiation can be quite debilitating and if the amount of time off you're going to have to take is an issue for you, he will need you more then. Sent from my iPhone using Tapatalk
  10. You might consider sleeping in a reclining chair the first few days. That will support your ribs and rib expansion better. Tuck those pillows in & around for some extra support. Also easier to get out of than a bed. Have one pillow to hug incase you cough or sneeze. You will be given an incentive spirometer to help prevent anesthesia induced pneumonia and to strengthen the lungs. Use it religiously. Sent from my iPhone using Tapatalk
  11. Yes do come to a Hope Summit, either regional or national. Its an amazing experience to hang out with do many survivors and listen as they share their stories and you get to share yours.
  12. Cisplatin is one of the toughest drugs in the chemo arsenal. Mine was paired with etopicide. It saved my life. Expect that things will taste funny as it affects the taste buds. Use plasticware to reduce the metallic taste. Keep him well hydrated and include a sports type drink because the fluids wash away the electrolytes. Stock both stool softeners and anti diarrhea med. it can go either way. He may not tolerate his fave foods. That will change back after treatment ends. The important thing is that he gets calories he needs to fuel healing. Hair may not all fall out. Mine didn't. It thinned a lot but came back darker. Report any ringing in the ears and neuropathy to the dr.
  13. Kaarenmarie, You've proved that you are quite the fighter and that should help carry you through this too. Did they get enough of the tumor to run genetic testing on it? If this was my body I would insist on testing for EGFR, ALK, ROS1. I add the ROS1 because of prior radiation. At this time they are not using the anti pd1 drugs on patients who've had more than one primary but you might have them check it incase you decide to ask for Expanded Access of a pd1 inhibitor.
  14. Its because of the size of the primary they are ordering the dust up or adjuvant chemo for the cancer. A larger primary has had more opportunities to shed cells. So as the others have said this is to be cautious.
  15. Sometimes after a vats lobectomy others have reported using a lounge chair to sit and sleep on with pillows tucked in either side to help support the rib cage. My vats was for a pleurectomy, placement of a pleurx catheter and pericardial window so my recovery a bit different. Tell your surgeon that you want the tumor tested for EGFR, ALK and pd1 expression. Due to the smoking it is likely that you are neither EGFR or ALK But its not impossible. Its more likely that there will be pd1. At this time that is knowledge that you can store for later. Pd1 and pdl1 drugs are not being used yet in patients who've had 2 or more primaries but that will change eventually. I send hope that this is In Situ but limits to stage one can be cured. I understand your frustration. I was dx with stage 4 lung cancer 5+ years ago and stage one DCIS a year ago.
  16. If your dad is actively being treated he should not have a shot. It needs to wait until he has not had recent chemo. An adult can still catch chicken pox but they are more likely to develop shingles if exposed. Remember a couple years ago Barbara Walters missed some days on the View because at 80 something she caught chicken pox.
  17. This will help with some information. http://www.lungevity.org/about-lung-cancer/lung-cancer-101
  18. Elizabeth, So very sorry that your dad is in this position. Until he has had a biopsy there is no way they can be 100% certain it is cancer. Also a biopsy will tell them what kind of cancer it is so they know what types of chemotherapy they should use.
  19. Stage 4 lung cancer doesn't have to be an automatic or immediate death sentence. Mine was diagnosed 5+ years ago. Do you know if they tested for mutations? Also, there are several types on nsclc. Do you know which he has? With more info we can guide you to better recommendations.
  20. What Tom said about the tumor samples is very important. Here in the US they've approved a second line drug for squamous cell carcinoma and I'm hoping that it will be approved in Canada and the UK soon.
  21. If this was me? I would run, not walk, to get a second opinion at a facility that has an NCI Comprehensive Cancer Center designation. He should be seen by a lung cancer specialist. Its my understanding that standard of care is that nodules should be followed every 2-4 months, with 3 months being most common. Still though 4.6 mm is too small to biopsy. And there are so many things that can cause nodules ranging from allergens and infection or exposure to home or commercial fumes.
  22. No it isn't easier but now you do know what you are facing. Its too soon to know the results of the mutation testing but the enemy has a name and that gives you power to begin learning about his options. Remember, this is no longer an immediate death sentence. Many, like me, are living with this long term as a chronic disease. I'm 5+ years with a stage 4 diagnosis of adenocarcinoma. My co workers husband is 7+ years with small cell limited. When it comes time for that Christmas trip, keep it. A couple day's break from treatment will not hurt him or the outcome of that treatment.
  23. Denzie

    Mobility Help

    Googling temporary wheelchair ramps I found some for sale starting at $100. There are some that come with a carrier that allows you to carry them with you in tour car. They can also be rented. Cancercare.org may have funds available yet. There's a questionnaire that you have to fill out first to pre qualify. IF they have any left.
  24. Meant to add: stock both anti diarrhea meds and stool softeners as you are likely to experience both at some point during the course of treatment.
  25. My doublet was cisplatin/etopicide. Carboplatin is slightly easier on the system than cisplatin. I'm 5 years out from treatment. You will be given steroids at the time of treatment and an Rx for some to take at home after. The nausea that used to accompany chemo is greatly reduces and quite manageable. Do stock up on some sports type drinks that will replace electrolytes washed out by extra fluids you need to drink. Your hair may thin with treatment but you have a good chance of not losing it. If you feel any burning coldness or numbness in in your hands or feet report it to the dr. Also report any ringing in the ears if it develops. Take lots of reading material, a laptop or tablet. I kept a 'chemo bag' that I kept stocked with snacks and Boost along with books. Your first day expect that they will give you fluids and the steroids by IV first. Then one chemo agent before the other. They will administer them slowly the first day and watch you closely for any sign of allergic reaction. They will check your blood weekly to monitor platelet levels and to watch for signs that the chemo is injuring the kidneys. Drink lots of fluids. Don't freak out if your values dip low enough to require a transfusion. I had 2 during the course of treatment. Don't be afraid to ask your dr for an anti anxiety med.
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