Jump to content

ColleenRae

Members
  • Content Count

    189
  • Joined

  • Last visited

  • Days Won

    5

Reputation Activity

  1. Like
    ColleenRae reacted to LouT in Moving forward with the Iovance TIL trial   
    Lexie,
    I'm reading this thread and I fully understand your reasoning for participating in this trial.  The "once and for all" part of the recovers is a big deal and you're smart to do it while you're strong enough overall to withstand it and reap the fullest benefit.  I look forward to your updates and will keep you in my prayers.
    Lou
  2. Like
    ColleenRae reacted to Rower Michelle in Moving forward with the Iovance TIL trial   
    Good!  I'm glad Andrew was of some assistance.  Like you said, it's a big decision to move forward with this trial.  In some respect, even though Dr. B will be joining the Johnson & Johnson research family, we are all going to benefit as the science advances.   Cellular therapies are the way forward and now you are leading the way, for that we're so grateful you're willing to do this.     Let us know how it goes with your daughter, one kid down, one to go....
  3. Like
    ColleenRae reacted to LexieCat in Moving forward with the Iovance TIL trial   
    I talked with my son this morning (daughter was tied up so it may be this weekend before we connect) and I could tell he was a bit worried about how daunting this trial would be.  But I think he understood my reasoning, once I explained it. This may be my best/only shot at actually wiping out my cancer--for all and for good.  I know there are lots of other available treatments (including trials) out there that I can try. Who knows, maybe one of them would have the same result? But this seems like my first, best shot at TRYING for a cure. I passed on curative treatment the first time, since everyone thought the radiation would be too tough on my esophagus. If this fails, oh well, I tried, contributed to research, and will have to move on to another treatment. But if it WORKS...
  4. Like
    ColleenRae reacted to LexieCat in Moving forward with the Iovance TIL trial   
    I just thought about it, and I noticed that they weren't ordering a CT for the chest, but rather just the abdomen/pelvis. I just messaged the research nurse to say, you know there's a scan of my abdomen/pelvis on that disc I dropped off yesterday, right? In addition to the chest CT? She messaged back (yes, at 7:30 am) and said, THANKS--great catch, no, you don't need to have another pelvic CT done--the one you just had is sufficient. She said I was an "awesome patient" to be so alert for things like that.
    Once again, it pays to double-check ANYTHING that seems questionable. It probably wouldn't have hurt anything to have another CT, but why have a procedure (and additional radiation) if I don't need it? 
    I also checked on discontinuing my prescription for the dexamethasone (since I'm not continuing with chemo right now) and was told I can cancel that for now. 
  5. Like
    ColleenRae reacted to LexieCat in Moving forward with the Iovance TIL trial   
    Yeah, I plan to use this thread to document how this trial progresses. I just got an email from the nurse re all the testing that needs to be done prior to surgery. I'll be hearing from the various departments to schedule them:
    CT of pelvis and MRI of the head; Laboratory tests and EKG- including blood and urine; ECHO cardiogram, exercise stress test; Pulmonary function tests.  
  6. Like
    ColleenRae got a reaction from Cin in New - Scared   
    Hi Barbara,
    I, too, want to congratulate you on getting the lung CT... No, the news is not good to hear, but much better than having a cancer there you are not aware of!
    I had a lobectomy in Oct 2018 of my right upper lobe. I ended up with Stage 1a, adenocarcinoma NSCLC and fortunately did not require any additional treatment at that time.  I, too, was really freaking out about the chest tube - I'm sure I read somewhere that it was extremely painful when it was removed. For some reason, that really stuck with me and frightened me as well - and I worked myself up into an anxious state over it prior to surgery. It really was a waste of energy to worry about! I had surgery on a Monday and went home on Thursday. I'm trying to remember (that should give a bit of a clue, not a very memorable experience!) but I think the chest tube came out the day after surgery. I was still fairly well drugged at that point, but I remember getting very anxious and even a little belligerent with the P.A. who came to remove it.  She was talking about sending me home, taking out the tube, etc. and I remember yelling that I did not want to be discharged early, etc.  In any case, I was not very cooperative, but she pulled the tube and it was over in a flash. I don't recall feeling any pain (that could have been the pain meds) but there was blood that splattered - but don't let that freak you out.
    It's a good thing you found this and you will know more once you have a pathology report.  I was scared as can be but overall things went fairly smoothly. I had to return to the hospital about 2 weeks following my surgery for a pleural effusion (they had to drain fluid from my lung - no anesthesia - right in the Dr's office - it really was a piece of cake and made me feel much better!). I think my recovery took a bit longer compared to what some people have experienced here, but I was walking 90 minutes a day shortly after the surgery.  Walk and keep walking! It helps so much both mentally and physically!
    I have been getting scans regularly (about every 6 months) since the 2018 surgery. My surgeon felt the surgery was very successful and deemed I was "cured". Well, I've learned that can mean many things. Five months after the surgery another small suspicious spot showed up in the upper left lung. We've been watching it. It's grown from 5mm to 8mm but is remaining stable. They suspect it is another slow growing cancer and it will likely need to be treated with radiation - so I am, once again, trying to educate myself and not be afraid of what I don't know. What I think we all need to keep in mind is that a cancerous nodule may be removed successfully and "cure" that particular area of one's lung, but that does not mean the cancer won't find another area to develop in.  That is why continued follow-up with your doctor(s), CT scans, etc. is vital.  I firmly believe if we can catch cancer in the early stages we can keep it under control and even possibly "cure" it - adding to the quality and length of our lives. I don't want this to sound judgemental, at all, but do try to quit smoking if you haven't. I smoked for close to 40 years and quit cold turkey six months before my lobectomy. It was very hard the first few days; I'd always used smoking as a crutch for stress. My lung capacity is still quite good but I can tell my breathing has changed. I can't stand the smell of smoke now. I'm angry with myself for smoking for as long as I did, but so grateful I stopped.
    Wishing you the best and so glad you are finding support and information here.
  7. Like
    ColleenRae reacted to TJM in I HATE THIS CANCER!!!   
    Exceptional post. It captured the cancer journey better than any I have read.
    I have nothing to add except to wish you the best.  FWIW I am about to start my second journey. Not looking forward to it but going to do it for my family.
    Stay strong
    Tom
  8. Like
    ColleenRae reacted to LouT in I HATE THIS CANCER!!!   
    This disease is full of surprises and none of them are good.  But, there are more treatments everyday and you've already heard from people who are still surviving and living full lives.  I've learned in life that what Michelle says is very true; you can't change or control what anyone else does or feels about a situation, you can only change or control your own thoughts and actions to get through difficulty as well as possible.  I pray for you to have the strength and support to be the person writing to someone in the future much as Tom has done for so many people.  You've a got a support family now so please don't be a stranger.
    Lou
  9. Like
    ColleenRae reacted to GaryG in I HATE THIS CANCER!!!   
    Glad to see you join us. You certainly had your share of disappointments and bad surprises like many of us but were very good at describing them and getting them of your chest. I have a unique experience because I was a care taker of my first wife who died of colon cancer after 2 1/2 year battle. During that period I was completely ignored by some of my best friends and family members. I am also a lung cancer patient and have been for 7 months. I learned a lot from my first encounter with cancer. I can see both sides of your story.  We can get emotional. We can be disappointed. We can lose faith. We can feel sorry for ourselves but there is one very truth that never goes away. We must first and foremost beat cancer. Our emotions, goals and efforts must all go toward surviving because without surviving nothing else matters. 
    The best thing that happened to me is joining this group. It put life in perspective for me and I found friends I never thought I had. I can complain, vent, ask questions and most of all get inspired each time I feel weak. I look up to many survivors here and say if they had the courage and wisdom to beat cancer so can I.  So my friend I invite you to do the same. Make it a mission to get better and concentrate first on beating cancer. We are  here to help. I wish you the best.
  10. Like
    ColleenRae reacted to Tom Galli in I HATE THIS CANCER!!!   
    Welcome also.
    Yours is a compelling story that matches the pain and anguish of all of us here. I can only offer my experience as a measure of hope. I had 5 recurrences, after chemo/radiation, 3 surgeries, more chemo, then more again, and finally precision radiation. I was diagnosed in February 2004 and progressed to Stage IV. If I can live, so can you!
    Stay the course.
    Tom
  11. Like
    ColleenRae reacted to Rower Michelle in I HATE THIS CANCER!!!   
    Hello and Welcome 
    To your new family here where it is safe to say anything.  You’ve elegantly articulated what almost everyone here has experienced to one degree or another.   The loss of a support system is quite common however no one really ever talks about it.   I had a similar experience and what I’ve done over the course of the last two years is rebuild my support network starting with a Lungevity Life Line Buddy.  The phone buddy is a great resource who really understands. Another face to face resource is our Zoom Meet Ups 
    https://lungevity.org/for-patients-caregivers/support-services/virtual-meetups-for-lung-cancer-patients-survivors-and
    When I was diagnosed my Integrative Oncologist told me to find someone other than my spouse to really lean on to navigate the inevitable dark days.  It was excellent advice, my husband isn’t resilient. 
     
    I have learned I can not control how other people cope with my diagnosis but I can manage with all the help I receive here.  I have found over time people take their cue from me and the death stares have slowly disappeared.  
     
    Diagnosis is not prognosis, with all the advances many of us are living with this disease as a chronic condition. 
     
    I’m glad you found us.  
     
    Michelle
  12. Like
    ColleenRae reacted to teesqr58 in I HATE THIS CANCER!!!   
    I’m a 62-year old man with Stage IV Non Small Cell Lung Cancer (NSCLC)
    In May of 2017 I was diagnosed with Stage 1 Non Small Cell Lung Cancer (NSCLC) in my left lung, and I was scheduled for surgery within the next 2-weeks. It was devastating news for me and my partner Bob of 30-years and we had much difficulty accepting the news, not to mention my 26-year old nephew who lived with us and whose own mother had died from lung cancer some 10-years prior. On the scheduled day, I got up at 3 AM and showered with surgical soap as instructed, and by 5 AM I was making my way across the still dark hospital parking lot as the sun began to barely rise above the horizon. Once in the hospital, time seem to accelerate and before I knew it I was waking up in the recovery room while being told that the surgeon had removed an entire lobe of my lung. My healing from the surgery went well and in follow up scans 3-months later I was free from cancer and given a good prognosis. Thank God I had dodge the cancer bullet.
    Then in May of 2018 routine scans showed the cancer had returned in the same lung and so I spent the summer on chemo and radiation with luckily very little side effects. By fall my scans showed that the cancer had disappeared and I was now considered in remission. I couldn’t believe my good fortune and that I had now twice dodged the cancer bullet. Everything moved along fine and follow up scans still showed no sign of cancer throughout 2019. We were so relieved and thankful to God for this blessing.
    Then in May 2020 my CT scan showed the cancer had returned again in the same lung, but this time had also spread to my right lung, lymph nodes in my chest, and my liver. I was diagnosed Stage IV and told that without treatment I had only 6-9 months to live. I don’t cry easily but I just broke down in the doctor office and couldn’t stop crying. How was I going to tell my partner and my nephew this news? Would I have the courage and strength to be able to do it? Would they have the courage and strength to handle it? I left the doctor office in a daze and when I got to my car I immediately called my brother and broke the news to him and my sister-in-law. They were so stunned that they didn’t say anything for the first 10-minutes of the conversation. Finally my brother spoke and told me he was so sorry to hear this and that he and his wife would do everything they could to support us through it all. I then left and went to my partner’s work and broke the news to him. In disbelief all we could do was hold each other and cry. Neither one of us knew how to process such awfulness. I left there after some time and went home where I sat down and talked to my nephew. Since both of his parents have been deceased for some time I am more like a father to him. He did not take the news well at all. It opened up all the old emotional wounds of his mother having died of lung cancer. The news left him emotionally wrought and he has been unable to adequately deal with it in the months since.
    I started chemo and immunotherapy in May and will have to continue the treatments until told otherwise. My last scans showed the cancer hasn’t shrunk nor grown and we are thankful for that. However, side effects from treatment have left me very sick some days and very fatigued other days. Over several months and through palliative care the doctors have managed to get my side effects under control and I am physically doing a lot better. Unfortunately I have days that I deal with a lot of depression and anger because of how cancer has changed my life and the lives of people I love. I have friends that were supportive at first but then have gradually slipped away until I no longer see them. I have family members I am close to that I hardly ever hear from anymore. My family that has stuck around and my own partner treat me like I am going to drop dead any minute as they are constantly buying me things or trying to do too much for me. Don’t get me wrong I appreciate the love and concern but it is as though they have already dug my grave and are prepared to put me in it. But the biggest blow came from my own nephew who broke down one night crying saying over and over “everyone I love dies.” My heart broke in pieces over that. Things were so hard for him that he left October 1st to go live with his brother in another state. I miss him so much as he was here with me every day while my partner works so now I am home alone all day. I truly miss his company and have been so depressed over him leaving.
    I hate this cancer and what it does to all of us that have it, and the caretakers and loved ones that have to deal with it. I know cancer isn’t easy for any of those involved and I know some folks have a much harder path than I have had. It breaks my heart especially to see the children that are suffering with this wretched disease. I don’t mean to sound like I am complaining because God has truly blessed me and continues to, but this is the hardest road I have ever been on in my life because of the emotional aspects and believe me my life wasn’t easy from the beginning. I just needed to sit down and type this out because I can’t really share any of these feelings with people I know. I have always been the strong one that people come to and now I am not so strong anymore. May God bless all of you that reads this and know my heart goes out to you and your loved ones for your cancer journey.
  13. Sad
    ColleenRae got a reaction from MarieE in I've missed following everyone's progress... and I'm scared :-)   
    Hello,
    I have not been able to follow the forum consistently for some time.  Things have definitely been taking a toll in the last couple of months.  I truly miss hearing how so many of you are doing. This has really been my only social outlet since being diagnosed and treated for lung cancer in 2018, and especially since the advent of COVID.  I've been wanting to attend a zoom meeting, but there has always been a conflict on Fridays it seems for weeks now. Hoping the addition of new days during the week will allow me to attend.
    I just need to check in here. I don't even know if what I have going on is in any way related to cancer, but need to share somewhere.  In early September, my son (he's 22, on the Autism spectrum, lives with me) just lost it. His community college was starting up again - his final year - and he was really down about having to attend classes online. He is set to graduate this coming spring, so it's been quite a let down. A number of things were piling up for him and he just lost it and returned to behavior that is common for those on the spectrum, but something he has not engaged in for years - self-harm. To make a long story short, he split his head open and I had to call an ambulance. Head wounds are not pretty. There was blood everywhere. I was shocked he had hurt himself and tried to stop the bleeding until the EMT's arrived. They took him to the ER and I followed by car. I did not have time to think about exposure to COVID until later. We spent about 6 hrs in the ER. They were able to repair the wound, no concussion found. Thankfully he was okay. He was very shook up himself. There are a lot of things (not the place to get into here) that have been building up for him - one of which is my advancing age and history of cancer. He had been on a wait list for therapist for a few months in our area. I called her as soon as we got home and explained the urgency of his needed support. Fortunately, she responded and he has been meeting with her weekly since September. (Unfortunately, his insurance won't cover her...so we're paying out of pocket, but it's worth every penny!).
    About 3 days after we had been in the ER for my son, I started feeling sick. My joints ached, I had a headache and was running a low fever. My initial thought was, great, I contracted COVID while at the ER. Then I woke up one morning and my entire left breast was inflamed. I could feel a couple of lumps. I have never experienced this, so I was truly frightened. I called my PCP and they would not see me due to the fever. But, it took me 3 days to even get a response from them re: this. They made the referral for the COVID test (my first) 3 days later. Fortunately, it was negative. That was a relief. Then I had to wait an additional 4 days before I could see my PCP. By that time the inflammation was subsiding. They told me to take Tylenol to help. I was then referred to imaging and had three different tests (mammogram, 2D imaging and ultrasound). I was terrified this could be inflammatory breast cancer; it had all the markers, but imaging said no. They believe it's due to calcification in the breast. They advised I do a repeat mammo and u/s in 5 months. The problem resolved itself, but I am still scared.
    At the same time, I discovered some small lumps in the arch of my foot... Dx'd as Plantar fibromatosis. Benign nodules. This is a progressive disease. The foot Dr. said it's likely genetic. I've never heard of anyone in my family having it. He also said it can be disabling and affect quality of life. He offered steroid shots. They aren't that painful, yet, so I declined and thought I'd do some research. I did find that that there is evidence that radiation will help treat these nodules. I need to look into this more. But, by this time, I was really feeling like I was falling apart. I love to walk. It's been affected due to COVID and if I have a painful, progressive foot illness, I will have a very hard time adjusting to that.
    Being me, I keep wondering if any of these issues are related to lung cancer. I was afraid it had metastasized.
    Then, about 12 days ago, I was assembling new file cabinets for my new work at home office space. I found my joints were incredibly sore and I could hardly get up off the floor. I was running a low grade fever as well. A week ago last Thursday, I could not sleep at all that night. I was chilled and running a fever in bed, with a terrible lower backache.  I got up the next morning and knew I had to see someone. My son was very worried and felt helpless as he does not drive. I called my PCP - 3 x before I was able to speak with anyone. They would not see me due to the fever and advised I go to an urgent care clinic or the ER. I decided to call 911 and made my first trip in an ambulance. The EMT's did not think I was sick enough to be taken by ambulance but I assured them I could not drive myself safely. They told me to insist that the ER give me a COVID test - apparently that is not standard procedure here! I was sure I had COVID...
    I spent 8 hours in the ER. I was shaking with fever. I was put on an IV with saline. I was given a chest x-ray and a cat scan. Blood tests. Some not-helpful nurse with a British accent kept coming in and saying "You are seriously ill. You have the rigors!" It was downright creepy. The N.P. who was attending me kept saying "You are really sick. I hate to say it, but you don't look too good". None of which was re-assuring. I finally said "Well since you've all come to the conclusion I'm seriously sick, could someone please tell me what the **** is wrong with me?"  I was then told they thought it could be a bladder infection, then it was diverticulitis, then I was even told "interstitial lung disease"... then this N.P. said "If you had waited 24 more hours I don't think you would have made it". Wow. I felt like I was in a bad dream.
    I was admitted to the hospital around 11 pm Friday night. I don't remember much about that night. I was not in the ICU. I was shaking and so cold. They packed me in ice to bring my fever down. On Saturday a.m. a N.P. came in to tell me they believed I was having an attack of diverticulitis. They reviewed my diet (I'm vegetarian) and said it was likely not my diet but due to stress. They weren't sure at that point if I would need surgery. Imagine that.  They were treating me with IV antibiotics and would not allow me to eat anything. My fever broke Sat. night. They decided to release me Sunday a.m. as a result. I was told to stick to a liquid diet for a few days and then start on a low fiber diet (which made no sense to me as fiber is encouraged to prevent diverticulitis...).
    So, I went home. As my son could not drive to get me, I had to take a cab from the ER to the pharmacy (and they did not have enough of the antibiotics I needed!) and then to my home ($60!). The next day, Monday, I called my PCP as the hospital told me to make sure I saw her in 2 days and to have her run more blood tests. I could not get a return call; only leave messages. On Tuesday my fever was still present, albeit low. I tried to reach my PCP. I tried to reach a Gastro specialist to address the dx of diverticulitis (but they couldn't see me until Nov. 3rd). I was really feeling alone in this journey. I even called my surgeon in Seattle and and a nurse said they weren't concerned about my dx... I didn't know who to reach out to other than the ER again. So, I got another cab and off I went. The ER Dr. ordered new labs and discovered my liver is now severely elevated. A new lab - from blood work while I was in the hospital - also came back with results that I had a superbug infection: Pseudomonas Aeruginosa. I had not heard of this before, but apparently it's common and one of those bugs that is resistant to antibiotics. I am allergic to penicillin, so this is a challenge. The ER Dr. changed one of my antibiotics - thinking that was causing my liver enzymes to elevate. He discharged me and told me to contact my PCP again to run more blood work this week.  That was on Tuesday. It took until Friday for my PCP to place the order. I went for a blood draw last Friday and got the results... my liver is elevated even more. My PCP's office said she is still too busy to see me, but they are "squeezing" me in to see a nurse tomorrow (Tues, 10/27) morning. I have lost approximately 10 lbs. I am frightened and can't seem to find decent healthcare anywhere here. We are so close to Seattle, where I could likely access better care, but I am too weak to drive there and my insurance won't cover transportation if I can access the same care here (regardless of whether I can really get in to see anyone!).
    So... I don't know if any of this is related to cancer or if my cancer has metastasized. I thought I was fairly healthy, but this has completely blown things apart for me. I keep thinking there must be some connection between the inflammation, fevers, etc. and cancer.
    Again, I'm sorry if this is long and doesn't even apply to this forum. I'm just scared. I hate COVID and the limitations it has set on us. I have been so careful since February. I hate going back and forth to the ER, Dr.'s office, etc. (by the way, the nurses were great at the hospital but that place was filthy...no one cleaning anything!). I am worried about my son. I thought cancer would kill me and now I'm afraid of COVID and a superbug that has rendered me immune-compromised. Please keep me / my son in your prayers... We could really use them.
    This took me "forever" to write. I will try to check in on the rest of you... I am too tired to scan all the postings to see how folks are doing. Please know you are always in my thoughts and prayers to the Universe!
    Colleen
     
  14. Like
    ColleenRae reacted to Lisa Haines in It's a Banner Day.....   
    Way to GO Michelle!!!!  (Clapping my hands very loudly)!!
    I truly HOPE this is a step in the right direction for ALL of us who have battled with the BS these insurers add to our lives.    This is not something ANY cancer patient should have to be dealing with -- especially a medication problem.  They should have "hand delivered" it to you in white gloves!
    We will ALL stay tuned  and we all MUST continue to stand up for what is right -- especially our health!! 
  15. Like
    ColleenRae reacted to Rower Michelle in It's a Banner Day.....   
    I don’t think I’m going to need a lawyer this time, yesterday I got so fed up with this (not so) merry go round a Department of Insurance Complaint was filed. I fully understand they have no jurisdiction but I felt like I had to do something.   
     
    HA.  I just got a call from the Department of Labor!   The KS DOI was so concerned about a Stage IV lung cancer patient not being able to obtain meds they filed a federal complaint on my behalf.  
     
    My former employer is in violation of the Federal COBRA laws!!  The DOL is opening an investigation and assured me they will resolve this issue (plus the employer will probably get a decent fine to boot).  
     
    Stay tuned!!!
  16. Like
    ColleenRae reacted to BridgetO in It's a Banner Day.....   
    Sue the b-----ds!  Or at least get a lawyer and have him/her threaten to sue. And hang in there,
    Bridget O
  17. Like
    ColleenRae reacted to Judy M2 in It's a Banner Day.....   
    2020 strikes again. Ugh! 
  18. Sad
    ColleenRae reacted to Rower Michelle in It's a Banner Day.....   
    Well folks what can I say, I'm not able to refill my targeted therapy this month because Anthem strikes again.  I've been disenrolled for a FIFTH time since September 1st.   Not able to obtain a new pair of eyeglasses either at this point.  I've filed yet another complaint with my former employer and this time with the State Department of Insurance. 
    Unbelievable.   
  19. Sad
    ColleenRae got a reaction from TJM in I've missed following everyone's progress... and I'm scared :-)   
    Hello,
    I have not been able to follow the forum consistently for some time.  Things have definitely been taking a toll in the last couple of months.  I truly miss hearing how so many of you are doing. This has really been my only social outlet since being diagnosed and treated for lung cancer in 2018, and especially since the advent of COVID.  I've been wanting to attend a zoom meeting, but there has always been a conflict on Fridays it seems for weeks now. Hoping the addition of new days during the week will allow me to attend.
    I just need to check in here. I don't even know if what I have going on is in any way related to cancer, but need to share somewhere.  In early September, my son (he's 22, on the Autism spectrum, lives with me) just lost it. His community college was starting up again - his final year - and he was really down about having to attend classes online. He is set to graduate this coming spring, so it's been quite a let down. A number of things were piling up for him and he just lost it and returned to behavior that is common for those on the spectrum, but something he has not engaged in for years - self-harm. To make a long story short, he split his head open and I had to call an ambulance. Head wounds are not pretty. There was blood everywhere. I was shocked he had hurt himself and tried to stop the bleeding until the EMT's arrived. They took him to the ER and I followed by car. I did not have time to think about exposure to COVID until later. We spent about 6 hrs in the ER. They were able to repair the wound, no concussion found. Thankfully he was okay. He was very shook up himself. There are a lot of things (not the place to get into here) that have been building up for him - one of which is my advancing age and history of cancer. He had been on a wait list for therapist for a few months in our area. I called her as soon as we got home and explained the urgency of his needed support. Fortunately, she responded and he has been meeting with her weekly since September. (Unfortunately, his insurance won't cover her...so we're paying out of pocket, but it's worth every penny!).
    About 3 days after we had been in the ER for my son, I started feeling sick. My joints ached, I had a headache and was running a low fever. My initial thought was, great, I contracted COVID while at the ER. Then I woke up one morning and my entire left breast was inflamed. I could feel a couple of lumps. I have never experienced this, so I was truly frightened. I called my PCP and they would not see me due to the fever. But, it took me 3 days to even get a response from them re: this. They made the referral for the COVID test (my first) 3 days later. Fortunately, it was negative. That was a relief. Then I had to wait an additional 4 days before I could see my PCP. By that time the inflammation was subsiding. They told me to take Tylenol to help. I was then referred to imaging and had three different tests (mammogram, 2D imaging and ultrasound). I was terrified this could be inflammatory breast cancer; it had all the markers, but imaging said no. They believe it's due to calcification in the breast. They advised I do a repeat mammo and u/s in 5 months. The problem resolved itself, but I am still scared.
    At the same time, I discovered some small lumps in the arch of my foot... Dx'd as Plantar fibromatosis. Benign nodules. This is a progressive disease. The foot Dr. said it's likely genetic. I've never heard of anyone in my family having it. He also said it can be disabling and affect quality of life. He offered steroid shots. They aren't that painful, yet, so I declined and thought I'd do some research. I did find that that there is evidence that radiation will help treat these nodules. I need to look into this more. But, by this time, I was really feeling like I was falling apart. I love to walk. It's been affected due to COVID and if I have a painful, progressive foot illness, I will have a very hard time adjusting to that.
    Being me, I keep wondering if any of these issues are related to lung cancer. I was afraid it had metastasized.
    Then, about 12 days ago, I was assembling new file cabinets for my new work at home office space. I found my joints were incredibly sore and I could hardly get up off the floor. I was running a low grade fever as well. A week ago last Thursday, I could not sleep at all that night. I was chilled and running a fever in bed, with a terrible lower backache.  I got up the next morning and knew I had to see someone. My son was very worried and felt helpless as he does not drive. I called my PCP - 3 x before I was able to speak with anyone. They would not see me due to the fever and advised I go to an urgent care clinic or the ER. I decided to call 911 and made my first trip in an ambulance. The EMT's did not think I was sick enough to be taken by ambulance but I assured them I could not drive myself safely. They told me to insist that the ER give me a COVID test - apparently that is not standard procedure here! I was sure I had COVID...
    I spent 8 hours in the ER. I was shaking with fever. I was put on an IV with saline. I was given a chest x-ray and a cat scan. Blood tests. Some not-helpful nurse with a British accent kept coming in and saying "You are seriously ill. You have the rigors!" It was downright creepy. The N.P. who was attending me kept saying "You are really sick. I hate to say it, but you don't look too good". None of which was re-assuring. I finally said "Well since you've all come to the conclusion I'm seriously sick, could someone please tell me what the **** is wrong with me?"  I was then told they thought it could be a bladder infection, then it was diverticulitis, then I was even told "interstitial lung disease"... then this N.P. said "If you had waited 24 more hours I don't think you would have made it". Wow. I felt like I was in a bad dream.
    I was admitted to the hospital around 11 pm Friday night. I don't remember much about that night. I was not in the ICU. I was shaking and so cold. They packed me in ice to bring my fever down. On Saturday a.m. a N.P. came in to tell me they believed I was having an attack of diverticulitis. They reviewed my diet (I'm vegetarian) and said it was likely not my diet but due to stress. They weren't sure at that point if I would need surgery. Imagine that.  They were treating me with IV antibiotics and would not allow me to eat anything. My fever broke Sat. night. They decided to release me Sunday a.m. as a result. I was told to stick to a liquid diet for a few days and then start on a low fiber diet (which made no sense to me as fiber is encouraged to prevent diverticulitis...).
    So, I went home. As my son could not drive to get me, I had to take a cab from the ER to the pharmacy (and they did not have enough of the antibiotics I needed!) and then to my home ($60!). The next day, Monday, I called my PCP as the hospital told me to make sure I saw her in 2 days and to have her run more blood tests. I could not get a return call; only leave messages. On Tuesday my fever was still present, albeit low. I tried to reach my PCP. I tried to reach a Gastro specialist to address the dx of diverticulitis (but they couldn't see me until Nov. 3rd). I was really feeling alone in this journey. I even called my surgeon in Seattle and and a nurse said they weren't concerned about my dx... I didn't know who to reach out to other than the ER again. So, I got another cab and off I went. The ER Dr. ordered new labs and discovered my liver is now severely elevated. A new lab - from blood work while I was in the hospital - also came back with results that I had a superbug infection: Pseudomonas Aeruginosa. I had not heard of this before, but apparently it's common and one of those bugs that is resistant to antibiotics. I am allergic to penicillin, so this is a challenge. The ER Dr. changed one of my antibiotics - thinking that was causing my liver enzymes to elevate. He discharged me and told me to contact my PCP again to run more blood work this week.  That was on Tuesday. It took until Friday for my PCP to place the order. I went for a blood draw last Friday and got the results... my liver is elevated even more. My PCP's office said she is still too busy to see me, but they are "squeezing" me in to see a nurse tomorrow (Tues, 10/27) morning. I have lost approximately 10 lbs. I am frightened and can't seem to find decent healthcare anywhere here. We are so close to Seattle, where I could likely access better care, but I am too weak to drive there and my insurance won't cover transportation if I can access the same care here (regardless of whether I can really get in to see anyone!).
    So... I don't know if any of this is related to cancer or if my cancer has metastasized. I thought I was fairly healthy, but this has completely blown things apart for me. I keep thinking there must be some connection between the inflammation, fevers, etc. and cancer.
    Again, I'm sorry if this is long and doesn't even apply to this forum. I'm just scared. I hate COVID and the limitations it has set on us. I have been so careful since February. I hate going back and forth to the ER, Dr.'s office, etc. (by the way, the nurses were great at the hospital but that place was filthy...no one cleaning anything!). I am worried about my son. I thought cancer would kill me and now I'm afraid of COVID and a superbug that has rendered me immune-compromised. Please keep me / my son in your prayers... We could really use them.
    This took me "forever" to write. I will try to check in on the rest of you... I am too tired to scan all the postings to see how folks are doing. Please know you are always in my thoughts and prayers to the Universe!
    Colleen
     
  20. Sad
    ColleenRae got a reaction from Tom Galli in I've missed following everyone's progress... and I'm scared :-)   
    Hello,
    I have not been able to follow the forum consistently for some time.  Things have definitely been taking a toll in the last couple of months.  I truly miss hearing how so many of you are doing. This has really been my only social outlet since being diagnosed and treated for lung cancer in 2018, and especially since the advent of COVID.  I've been wanting to attend a zoom meeting, but there has always been a conflict on Fridays it seems for weeks now. Hoping the addition of new days during the week will allow me to attend.
    I just need to check in here. I don't even know if what I have going on is in any way related to cancer, but need to share somewhere.  In early September, my son (he's 22, on the Autism spectrum, lives with me) just lost it. His community college was starting up again - his final year - and he was really down about having to attend classes online. He is set to graduate this coming spring, so it's been quite a let down. A number of things were piling up for him and he just lost it and returned to behavior that is common for those on the spectrum, but something he has not engaged in for years - self-harm. To make a long story short, he split his head open and I had to call an ambulance. Head wounds are not pretty. There was blood everywhere. I was shocked he had hurt himself and tried to stop the bleeding until the EMT's arrived. They took him to the ER and I followed by car. I did not have time to think about exposure to COVID until later. We spent about 6 hrs in the ER. They were able to repair the wound, no concussion found. Thankfully he was okay. He was very shook up himself. There are a lot of things (not the place to get into here) that have been building up for him - one of which is my advancing age and history of cancer. He had been on a wait list for therapist for a few months in our area. I called her as soon as we got home and explained the urgency of his needed support. Fortunately, she responded and he has been meeting with her weekly since September. (Unfortunately, his insurance won't cover her...so we're paying out of pocket, but it's worth every penny!).
    About 3 days after we had been in the ER for my son, I started feeling sick. My joints ached, I had a headache and was running a low fever. My initial thought was, great, I contracted COVID while at the ER. Then I woke up one morning and my entire left breast was inflamed. I could feel a couple of lumps. I have never experienced this, so I was truly frightened. I called my PCP and they would not see me due to the fever. But, it took me 3 days to even get a response from them re: this. They made the referral for the COVID test (my first) 3 days later. Fortunately, it was negative. That was a relief. Then I had to wait an additional 4 days before I could see my PCP. By that time the inflammation was subsiding. They told me to take Tylenol to help. I was then referred to imaging and had three different tests (mammogram, 2D imaging and ultrasound). I was terrified this could be inflammatory breast cancer; it had all the markers, but imaging said no. They believe it's due to calcification in the breast. They advised I do a repeat mammo and u/s in 5 months. The problem resolved itself, but I am still scared.
    At the same time, I discovered some small lumps in the arch of my foot... Dx'd as Plantar fibromatosis. Benign nodules. This is a progressive disease. The foot Dr. said it's likely genetic. I've never heard of anyone in my family having it. He also said it can be disabling and affect quality of life. He offered steroid shots. They aren't that painful, yet, so I declined and thought I'd do some research. I did find that that there is evidence that radiation will help treat these nodules. I need to look into this more. But, by this time, I was really feeling like I was falling apart. I love to walk. It's been affected due to COVID and if I have a painful, progressive foot illness, I will have a very hard time adjusting to that.
    Being me, I keep wondering if any of these issues are related to lung cancer. I was afraid it had metastasized.
    Then, about 12 days ago, I was assembling new file cabinets for my new work at home office space. I found my joints were incredibly sore and I could hardly get up off the floor. I was running a low grade fever as well. A week ago last Thursday, I could not sleep at all that night. I was chilled and running a fever in bed, with a terrible lower backache.  I got up the next morning and knew I had to see someone. My son was very worried and felt helpless as he does not drive. I called my PCP - 3 x before I was able to speak with anyone. They would not see me due to the fever and advised I go to an urgent care clinic or the ER. I decided to call 911 and made my first trip in an ambulance. The EMT's did not think I was sick enough to be taken by ambulance but I assured them I could not drive myself safely. They told me to insist that the ER give me a COVID test - apparently that is not standard procedure here! I was sure I had COVID...
    I spent 8 hours in the ER. I was shaking with fever. I was put on an IV with saline. I was given a chest x-ray and a cat scan. Blood tests. Some not-helpful nurse with a British accent kept coming in and saying "You are seriously ill. You have the rigors!" It was downright creepy. The N.P. who was attending me kept saying "You are really sick. I hate to say it, but you don't look too good". None of which was re-assuring. I finally said "Well since you've all come to the conclusion I'm seriously sick, could someone please tell me what the **** is wrong with me?"  I was then told they thought it could be a bladder infection, then it was diverticulitis, then I was even told "interstitial lung disease"... then this N.P. said "If you had waited 24 more hours I don't think you would have made it". Wow. I felt like I was in a bad dream.
    I was admitted to the hospital around 11 pm Friday night. I don't remember much about that night. I was not in the ICU. I was shaking and so cold. They packed me in ice to bring my fever down. On Saturday a.m. a N.P. came in to tell me they believed I was having an attack of diverticulitis. They reviewed my diet (I'm vegetarian) and said it was likely not my diet but due to stress. They weren't sure at that point if I would need surgery. Imagine that.  They were treating me with IV antibiotics and would not allow me to eat anything. My fever broke Sat. night. They decided to release me Sunday a.m. as a result. I was told to stick to a liquid diet for a few days and then start on a low fiber diet (which made no sense to me as fiber is encouraged to prevent diverticulitis...).
    So, I went home. As my son could not drive to get me, I had to take a cab from the ER to the pharmacy (and they did not have enough of the antibiotics I needed!) and then to my home ($60!). The next day, Monday, I called my PCP as the hospital told me to make sure I saw her in 2 days and to have her run more blood tests. I could not get a return call; only leave messages. On Tuesday my fever was still present, albeit low. I tried to reach my PCP. I tried to reach a Gastro specialist to address the dx of diverticulitis (but they couldn't see me until Nov. 3rd). I was really feeling alone in this journey. I even called my surgeon in Seattle and and a nurse said they weren't concerned about my dx... I didn't know who to reach out to other than the ER again. So, I got another cab and off I went. The ER Dr. ordered new labs and discovered my liver is now severely elevated. A new lab - from blood work while I was in the hospital - also came back with results that I had a superbug infection: Pseudomonas Aeruginosa. I had not heard of this before, but apparently it's common and one of those bugs that is resistant to antibiotics. I am allergic to penicillin, so this is a challenge. The ER Dr. changed one of my antibiotics - thinking that was causing my liver enzymes to elevate. He discharged me and told me to contact my PCP again to run more blood work this week.  That was on Tuesday. It took until Friday for my PCP to place the order. I went for a blood draw last Friday and got the results... my liver is elevated even more. My PCP's office said she is still too busy to see me, but they are "squeezing" me in to see a nurse tomorrow (Tues, 10/27) morning. I have lost approximately 10 lbs. I am frightened and can't seem to find decent healthcare anywhere here. We are so close to Seattle, where I could likely access better care, but I am too weak to drive there and my insurance won't cover transportation if I can access the same care here (regardless of whether I can really get in to see anyone!).
    So... I don't know if any of this is related to cancer or if my cancer has metastasized. I thought I was fairly healthy, but this has completely blown things apart for me. I keep thinking there must be some connection between the inflammation, fevers, etc. and cancer.
    Again, I'm sorry if this is long and doesn't even apply to this forum. I'm just scared. I hate COVID and the limitations it has set on us. I have been so careful since February. I hate going back and forth to the ER, Dr.'s office, etc. (by the way, the nurses were great at the hospital but that place was filthy...no one cleaning anything!). I am worried about my son. I thought cancer would kill me and now I'm afraid of COVID and a superbug that has rendered me immune-compromised. Please keep me / my son in your prayers... We could really use them.
    This took me "forever" to write. I will try to check in on the rest of you... I am too tired to scan all the postings to see how folks are doing. Please know you are always in my thoughts and prayers to the Universe!
    Colleen
     
  21. Like
    ColleenRae reacted to Tom Galli in decline   
    Just Me,
    I am so very sorry to learn of your loss. Small cell is very difficult to manage and brain mets and treatment methods are difficult choices.
    I can't offer an opinion on why no surgery for lung tumors but then approving a craniotomy. I suspect doctors believe small cell is so aggressive that surgery as a first line treatment rarely stops recurrence. The craniotomy may have been an attempt at palliative care to avoid intense pain. Brain tumors often cause intense pain and interrupt motor and mental abilities. 
    When I was facing my end of life decisions, I recall reading how cancer's spread to the spinal cord and causes intense pain. I didn't want to feel that pain and my wife and I agreed the best hospice care would be done in our home with increasing amounts of morphine to ward off feeling the pain. We chose hospice because we didn't want to endure the rigors of treatment with very low probability of success. If your decision for hospice care controlled his seizures, you did the right thing. 
    I know this experience was vastly hard for your family to endure. My faith fosters a belief that your husband is in a much better place now. Thank you for being a loving wife and superb caregiver for your husband, a lung cancer survivor.
    Stay the course.
    Tom
  22. Sad
    ColleenRae reacted to just me in decline   
    Hello everyone,
    Brain meets were diagnosed. We quickly were transsfered to neurology and went from one oncologist to the surgeon for a biopsy. On Friday September 18th he walked into the hospital. Monday the 21st he was sent home after suffering through a craniotomy with a tumor resection.  It doesnt make sense to me because his lungs were inoperable, so why would they be able to operate on his brain?  By the 23 he could no longer hold a spoon to feed himself. Although radiation was offered we declined. I didnt feel he had enough left in him to handle more treatment.  Hospice began on Friday , one week after surgery and he went home to the Lord last night.  
    Hospice was hard.  I dont know if anyone has had experience using them, or if our case was unusual.  We basically medicated my sweet husband 24/7 around the clock to make sure we kept the seizures under control. Then we slowly watched him die. Although he was surrounded by love, it was the hardest thing our family has ever done. Hospice quides but you  and is there for support but it is the family that provides the comfort care.
    Prayers for everyone in this group and maybe someday they will find a cure.
    Just me
     
  23. Like
    ColleenRae got a reaction from Roz in NED by Email....   
    Tom - You post so often helping others, I'm ashamed I did not even know you recently had a scan yourself. This IS excellent news.  Couldn't happen to a better guy! Very happy for you.
    Sorry your oncologist is retiring, but I'm sure he was happy to give you this, his final report, with such good news.
    Okay, now that you and Teri have your trademark sign-off, the rest of us are going to have to get creative...!
  24. Like
    ColleenRae got a reaction from LouT in I’m new here-NSCLC   
    Hi mam12198,
    I believe you are right... We can all relate to some days being harder than others - as well as being mad in our response to cancer.  I loved what you said above, as well, as it shows your fighting spirit!
    I also remind myself to be thankful to my GP / PCP for pushing me to get an early detection Lung CT scan as I would not have known what was lurking inside of me.  I had a previous PCP that I saw for years who never mentioned a lung CT once - knowing I was (then) a 30+ year smoker. I also have a family history of cancers, including breast and ovarian. That same PCP said it's "not necessary" to obtain any genetic cancer testing. Fortunately, I moved to a new area where the PCP insisted I get a lung CT, even though I had no symptoms and a new PCP just wrote a referral for genetic testing.  My initial lung CT showed multiple nodules, one of which was of concern. That was in Dec. 2016. I was 58 y.o. and terrified. I had to watch and wait. Due to the location and small size of the nodule in question, a biopsy could not be performed to confirm if the tumor was indeed cancer. A PET scan showed an uptake of 3.7. I chose to follow my surgeon's recommendation and have the upper right lung lobe removed via VATS surgery. That was in October 2018, so it was a long, almost two year wait from the time I had my first CT to the first step / action towards treatment. Not a day passed that I wasn't aware of something inside of me that might be cancer. The tumor ended up being NSCLC. I required no further treatment, so I should be grateful, and I am.
    But learning to live with this - and the new way of life (repeat cat scans, changes in breathing since surgery, anxiety, trying to "live in the moment", etc.) has been a challenge. We are now "watching", once again, another questionable nodule that appears to be a slow-growing ground glass semi-solid nodule on the upper left lobe. I have another CT scan in early April. I am trying to learn to be patient with the waiting. I want to be in control of this and to get it out of my body if it is another cancer... right now. But, as my surgeon said, if it is cancer, it is still too small for him to even find it if they were to operate. So, I try to divert myself by keeping busy, but the closer it gets to the next upcoming CT scan, the more anxious, crabby, distracted and unproductive I feel I become...
    I'm sorry you are here, but glad you found us / this site. You will find a wealth of support and information from others here. I am not a great contributor - and definitely not as knowledgeable as others here - but I come here to be inspired and to not feel as alone as I often do in this experience.  The positive outlooks and energy here from others in this battle is amazing.
  25. Like
    ColleenRae reacted to Steff in kjaMom   
    Hi kjaMom,
    I am so sorry that you have to see your son deal with lung cancer.  But I am happy to hear that he has a loving mother like you!  I'm a caregiver for my mom who has had NSCLC twice, originally 5 years ago and a recurrence 4 years ago.  Watching my mom go thru treatment was tough for me.  I'm lucky that she is a good patient and does what she is supposed to.  As for what you should do next, I wish I could tell you that.  Here's what I did, maybe it will help:  I armed myself with as much knowledge as possible about my mom's type of lung cancer and the treatments she was getting.  The main LUNGevity website has great resources that are up-to-date.  There are also great resources for caregivers too.  I personally have used their questionnaires to give me ideas of what questions I should be asking the docs.  While I feel confident in my mom's oncologist and knew she was on top of any issues my mom had, that wasn't the case for the times my mom was hospitalized due to complications from lung cancer and treatment.  My knowledge of her lung cancer, treatments, current meds, etc was helpful to hospital staff.  Empowering myself with knowledge helped me feel like I had some control over the situation (I'm a control freak!).  I also tried to keep up with new treatment options incase my mom's current treatment plan wasn't working.  I wanted to be ready to have an educated discussion with her docs rather than feeling like I was behind and trying to catch up.  I was able to ask questions in real time versus emailing or asking at the next appointment.  
    I personally love the idea of the 2 of you living together - if that is something he wants.  I wish I was able to do that with my mom, but my husband probably wouldn't have been too happy about it! lol
    Hope some of this helps.
    Take Care,
    Steff
×
×
  • Create New...