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Candi

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  1. Like
    Candi reacted to Rower Michelle in Occasional Relief   
    I’m so sorry to hear that!  Four months seems like a long time.  
    I’ve been reading Life Extension newsletters.  There’s adjunctive treatment like high dose curcumin & fish oil.  Doesn’t interfere with traditional treatment & reduces inflammation.
    I also found a link on YouTube about belly breathing.  I did this for ten minutes lying down every day.  It seemed to help.  
    Keep at it & soon this will pass! 
     
     
  2. Thanks
    Candi reacted to Rower Michelle in Occasional Relief   
    Hi Candi
    I had the pneumonitis about six weeks.  Then one day it started to clear & each day I felt better and better!  Don’t let the doctors determine the outcome!  
    I’m reading a great book- Love, Medicine & Miracles by Bernie Siegel MD.   God is on your side!! 
    Talk to your doc about what else you can do to boost your immune system.  I started taking Turkey Tail last week.  
    Go Candi Go! 
    Michelle
  3. Like
    Candi reacted to Rower Michelle in Occasional Relief   
    Hi Candi and Paula, 
    I had pneumonitis too- ugh!  I saw one of the other forum members invested in a very fancy pillow system for post-op.  My doctor recommended a memory foam mattress topper that had a gentle six inch incline.  It worked out to be a great solution as we could use it on my side of the bed while hubby wasn't disturbed.  We found it on Amazon for about $130.  The memory foam got me to sleep on my one side.    The pneumonitis will pass!  Stay on top of your doctors so that they can effectively manage the symptoms.  I don't wait for appointments and make ample use of my nurse care coordinator. 
    I'll let you ladies know how the mediation works out- at first I was worried about it (alternate religion) until someone explained prayer is talking and mentally active.  Mediation is getting your body to work for you.  I've been trying to DIY (but as a type A) I know I'm in dangerous territory.  The Kansas University Cancer Center offers it for no charge.   
    Keep the faith and we'll pull through this to join Tom on one of his cruises!!  
    Michelle 
     
  4. Like
    Candi reacted to PaulaC in Occasional Relief   
    Candi,  it seems like the period between 3&5 that I’m most free of pain. I know it’s weird but I’ve hated only being able to sleep on one side. I’m hoping that it’s going to get even better has I heal.
    Take Care
    Paula
  5. Thanks
    Candi got a reaction from PaulaC in Occasional Relief   
    I hope it gets better for you too Paula, I understand the frustration, the pneumonitis has forced me to be a “back sleeper” and it is so nice to roll over to my side during those hours as you said. It is weird but I’ll take it and hope it gets better here too!
    Candi
  6. Like
    Candi reacted to Rower Michelle in Occasional Relief   
    Something similar happened to me as well between 5am and 8am, the coughing spasms stopped and I could sleep for a solid three hours.  I’m not sure why either.  Maybe it’s a period of deep relaxation?   
    I’m going to try meditation to see how that works as soon as this creeping crud I’ve had since Monday passes.  
    Maybe meditation is worth a shot?
     
  7. Like
    Candi reacted to PaulaC in Occasional Relief   
    Candi I don’t have exactly what you  describe but I am able to roll over and sleep on my sore side with no pain. I cannot do this when napping or going to sleep. 
    As for breathing, one day I feel like I could walk miles and others I’m out of breath going from one room to the other. 
    Take Care
    Paula
  8. Like
    Candi got a reaction from Tom Galli in Newbie   
    Hi Bridget,
    i took your advice and contacted my oncologist, waiting to hear back. I was short of breath when I saw him on 10/21/18 and he scheduled me with a pulmonologist who I saw on Monday. His view was laying for almost 2 months in the hospital, my lungs created pockets and when I stand they naturally fill with air and because my lungs are still inflamed I don’t have the oxygen to fill them causing me this distress. I don’t know.....I have seen so many specialists now, all of them can’t just be guessing can they? Sometimes that’s what I feel happens but then think “this isn’t the first case they’ve seen, of course they know what they are looking at.” Well...I will wait to hear from my oncologist. Thank you Bridget❤️
  9. Like
    Candi got a reaction from Tom Galli in Newbie   
    Ok.... I promise I won’t make everyone crazy with back and forth posts, I’m kinda feeling that way myself? 😏 lol. As for my tests, scans and so on, things are improving and the cancer is shrinking. My oncologist is pleased but obviously not sharing too much excitement. I was feeling great, a little stronger each day, the last couple of days however, my oxygen saturation has not been staying up where it needs to be (my dr would probably have me back in the hospital if he knew) and to literally sit up takes my breath away and I then need to stay still and recover. Makes me think of the roller coaster ride Tom had mentioned. I’m not sure what to make of it but I suppose I have no choice but to continue on with my chemo they just restarted and hope it resolves the rest of the inflammation thus improving everything else??
  10. Like
    Candi got a reaction from BridgetO in Newbie   
    Ok.... I promise I won’t make everyone crazy with back and forth posts, I’m kinda feeling that way myself? 😏 lol. As for my tests, scans and so on, things are improving and the cancer is shrinking. My oncologist is pleased but obviously not sharing too much excitement. I was feeling great, a little stronger each day, the last couple of days however, my oxygen saturation has not been staying up where it needs to be (my dr would probably have me back in the hospital if he knew) and to literally sit up takes my breath away and I then need to stay still and recover. Makes me think of the roller coaster ride Tom had mentioned. I’m not sure what to make of it but I suppose I have no choice but to continue on with my chemo they just restarted and hope it resolves the rest of the inflammation thus improving everything else??
  11. Like
    Candi got a reaction from LaurenH in Newbie   
    Hi Lauren,
    my goodness what a difference a little time can make! In one big nutshell I had an MRI of my brain and a CT scan of my chest, abdomen, and pelvis and there are no new signs of cancer and what is seen has shrunk! I now have to see a pulmonologist and begin my chemo again next week. My oncologist was very pleased with the outcome of the tests and I have been thanking God since my appointment yesterday!!! Thank you for checking on me Lauren.
  12. Like
    Candi got a reaction from Tom Galli in Newbie   
    I’m scheduled for a respiratory therapy treatment evaluation next week. I’m not sure if it’s the same thing as after your surgeries Tom, but my breathing issues are due to the inflammation in my lungs from the reaction I had to either the radiation or chemo, they are not able to biopsy to know which one. Until the inflammation is clear ( and there is a chance it won’t they tell me) my breathing will be compromised. Scarring from another source has also taken place outside of the cancer which complicates things also. I sincerely hope I am not sounding as frustrating as I feel.
    Candi
  13. Like
    Candi got a reaction from Roz in Newbie   
    The news of outlasting expiration dates sounds good to me  My oncologist was actually very positive, I was the one that began the conversation with him by asking if he felt there was any hope so he went over his thoughts regarding that very thoroughly, but then went on to share the positives and everything he was willing and planning to do to get this under control so I could get on with life. I actually really liked him.
  14. Like
    Candi got a reaction from Roz in Newbie   
    Thank you Bridget and Judy, I look forward to sharing “good news” with everyone and the privilege to meet Tom.
  15. Sad
    Candi got a reaction from Tom Galli in Newbie   
    Thank You Tom and Bridget,
    Having the pre-existing scarring and pneumonia in my lungs has had me on oxygen 24/7 since June. Not the worst thing I suppose however it’s an adjustment to have it on me at all times. My current issue is elevated liver enzymes, not sure why, 6 different specialists had 6 different guesses from steroids to Tylenol to cancer so waiting for those results. I just wish I knew what I can expect, I feel good otherwise but I keep hearing the end result to lung cancer is not promising or accommodating.
    Candi
  16. Sad
    Candi got a reaction from Tom Galli in Newbie   
    Hi Bridget,
    I feel awful in complaining because I know so many out there are going through the same things. I was diagnosed in July (from out of nowhere??!!) and have been weak, nearly reliant on someone for absolutely everything and on oxygen 24/7....I still just cannot wrap my head around all of this? I have pneumonitis (inflammation in my lungs from either the KeyTruda in my chemo or radiation. Either way, it usually is not treatable and eventually fatal, however I have been on antibiotics and steroids for 4 months so my lungs are about half healed but not enough to allow me to walk with a walker or cane. My oxygen bottoms out as soon as I stand so my mobility is pretty limited. Is anyone on this forum at this stage? How on earth do you deal without losing your mind? I’ll get through this I know I will but it is so, so hard. Thank you for listening.
    candi
  17. Thanks
    Candi reacted to BridgetO in Newbie   
    Hi Candi,
    I'm sorry that youve been through all that!. Being in the hosptital  that long must be espcially hard for a person who's used to being active. And whatever else is going on, a couple of months of inactivity is bound to leave you with shaky muscles. I hope things start looking up for you soon. Hang in there.
    Bridget O
  18. Thanks
    Candi reacted to Tom Galli in Newbie   
    Candi,
    I’m praying for you also. 
    Complications — I’ve had more than a few. Same goes for interrupted treatment. 
    No doubt you are well acquainted with the concept that chemo has a downside. 
    I had a long hospitalization after my pneumonectomy. A high fever prompted an antibiotic assault and steroids and more complications. I’ve concluded that late stage treatment means a wild ride through the medical dictionary of maladies and remedies. But you know that. So...
    Stay the course. 
    Tom
  19. Like
    Candi got a reaction from BridgetO in Newbie   
    Hello Everyone,
    So I had the appointment with the oncologist on Friday and he stressed the first concern was to get an order out to radiology to schedule treatment on the spots on my brain. I called this morning and he dropped the ball and didn’t send the request. Another young guy in the oncologist office called to let me know the process has been started but it will take some time. I told him with all due respect the cancer has travelled from the lower lobe of my lung, into both lungs, my neck and brain in about 3 weeks, can he assure me that I safely have another 2-3 weeks to wait for their processing before receiving treatments? He said absolutely not, my health was more important than their procedures and he would get right on it. Is human life that unimportant to them??
  20. Like
    Candi got a reaction from Roz in Newbie   
    Thank you suecris and Judy. I did have the PET scan yesterday and an appointment with my dr today. The preliminary report states the cancer has spread in my lung to additional lymph nodes and there are 2 spots on my brain. I see the oncologist tomorrow to see if there is a plan of attack. I’m feeling good (not that that can’t go south quick) but for now I’m doing good.  Thank you so much for asking ❤️
  21. Like
    Candi got a reaction from Tom Galli in Newbie   
    Good morning Everyone,
    Had my first appointment with my oncologist yesterday, wasn’t great but wasn’t horrible. His first concern is the spots now on my brain, he says we go after those first and try to get them under control. He concerned also at how quickly the cancer has spread, but kinda said there is only so much that can be done and we will just have to try and get ahead of it. He said at this moment, he may give me a year, mainly because once metastasized to the brain, it can be hard to beat it. He has to biopsy the mass once more to determine the genetic’s of the cancer which will tell him what form of treatment may work on the remaining cancer, this will take about 2 & 1/2 weeks, I expressed that I hope I have that long given how quickly the cancer has spread. I shared all of this info with my one and only son, we cried. I’m not afraid to die but I know that feeling of losing a parent, my mom died when she was 53 also and it just seemed so soon for me, I still had so much that I wanted to share and experience with her. One thing I do believe and I think Judy shared it also, cancer will not determine when I leave this earth, God’s Word says that is His decision so if at the end this is it, that is what was intended by God anyway, not cancer. I hope everyone has a great day....thank you for all of your support and guidance.....stay strong!!
  22. Like
    Candi got a reaction from LexieCat in Newbie   
    The news of outlasting expiration dates sounds good to me  My oncologist was actually very positive, I was the one that began the conversation with him by asking if he felt there was any hope so he went over his thoughts regarding that very thoroughly, but then went on to share the positives and everything he was willing and planning to do to get this under control so I could get on with life. I actually really liked him.
  23. Like
    Candi got a reaction from Judy M. in Newbie   
    Thank you Bridget and Judy, I look forward to sharing “good news” with everyone and the privilege to meet Tom.
  24. Like
    Candi reacted to Judy M. in Newbie   
    Candi
    It is considered stage IV when it has spread to distant sites like the brain, but it certainly isn't game over. I was stage IV when I was diagnosed a year and 7 months ago. I'm still here and still enjoying being here. And there are many others considered stage IV who have been here longer than I have. But I know how you feel. The first time I talked to my Oncologist I told him I heard him saying, "You're dead." But I wasn't and I'm not. Our fearless leader Tom is a little busy right now, but he would tell you he was once told he had months to live and that was well over ten years ago. We'll each go home when the Lord gets ready to come and get us. Until then I want to stay positive (this group helps with that), enjoy every day, and keep fighting. You'll do well. 
    Judy M
  25. Like
    Candi reacted to BridgetO in Newbie   
    Hang in there Candi,  I bet you'll find that there's more than one availble treatment. And the reason Tom is "a little busy" is that he and his wife are on a cruise of the Baltic. He's really an inspriation for long-term survival. I hope you will be, too.
    Bridget
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