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ColleenRae

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  1. Like
    ColleenRae got a reaction from Tom Galli in Precision radiation for lung nodules   
    So glad it went well Pattymac! What a trooper you've been! Thank you for letting us know.  I, personally, appreciate this as I will be heading in this direction in the future. Happy to hear no side effects, other than fatigue... maybe that is from the emotional anticipation preceding the treatment as well... Good luck with the remaining two tx's. Will look forward to hearing more from you and keeping fingers crossed they blow that nodule away!
  2. Like
    ColleenRae reacted to Pattymac in Precision radiation for lung nodules   
    I wanted to wait a day after doing SBRT for my nodule just in case I had a side effect that I wanted to tell you about!!! No side effects, other than being a bit tired!! My experience has been a good one, the actual treatment was a bit more scary than I anticipated, but truly it is a miracle if they can zap it away! They are very kind where I go, just lying there as machines go around you, no pain in anyway, it takes about 40 minutes total to get you positioned and then the actual radiation is about 15 minutes! No down time, your life goes on as usual!! I have 2 more treatments, one this Friday and then again on Monday! I guess they will wait a bit and scan me in a few months to make sure it is gone! I would highly recommend SBRT if your DR thinks it would work for your situation!!! Let me know if anyone of you get this same treatment, I will continue to post my experience for the next 2 treatments!!
  3. Like
    ColleenRae got a reaction from Tom Galli in Precision radiation for lung nodules   
    Will be thinking of you and wishing you the best, Pattymac. Hope all goes well; I believe it will. We look forward to hearing how it goes...!
    Colleen
  4. Like
    ColleenRae reacted to Rower Michelle in Just need to vent   
    Hi Jenny, 
    I know exactly what you are talking about!!!!  I'm taking a targeted therapy similar to Tagrisso and maybe I can offer some insight about what worked (or more along the lines of what didn't) when I started treatment.  
    First of all- report the SOB to your doctor,  we can no longer assume regular symptoms in the post cancer world.  I had something similar which turned out to be a very serious side effect of the targeted therapy, pulmonary edema.  It was easily managed by Lasix and Potassium.  
    I was a competitive rower at the time I was diagnosed, before cancer (BC) I rowed 10-12K in the morning and walked/ran three miles in the afternoon.  My first targeted therapy mistake was the assumption I could resume my previous activities.  Fatigue comes along with the targeted therapy.  I struggled for months trying to get "back into shape" and this was met with months of disappointment and frustration. Energy is a pretty precious commodity.  Since I'm from NJ I think about it in terms of a pizza pie, there's 8 slices, how much energy goes into each slice to get me to 8.  If I walked five miles, which I'm sure I can do but it would use all 8 slices, no room for anything else. 
     
      Here are some tips that I wish someone could have shared with me to save me the heartache: 
    1. Try reverse engineering the walking, instead of nine miles, try two miles and see how you feel for the rest of the day.  Over the course of each week, incrementally add a little bit more.  For me, PC my walking limit with other daily activities is 2.8 miles. (3.2 was too much, 2.5 was too little)
    2. Read the spoon essay: https://www.theghoshcenter.org/blog/reduce-stress-feel-better-spoon-theory (similar to my pie) 
    3. Give yourself permission to go easy on yourself, be grateful for any level of activity.  There will be some targeted therapy days when you might have a good night's sleep and wake up WTH, with zip energy.   Happens despite our best effort.  Don't fight this, ride the relaxation wave and gear up a good book or Netfilx.  It's okay to rest.  Your body is fighting a war and rest is very important.  
    4. You already figured this one out, respect the "off button", no way of knowing when this is going to happen, but you will get very good at managing your energy so this happens less often. 
    5. Keep moving, even if it's just a little bit on the wipe out days.  A really short walk (5-10 minutes) is better than nothing. 
    Be patient and persistent, you WILL get the hang of this. 
    Sorry for the long response but your post really hit home for me.   Carry on! 
    Michelle 
  5. Like
    ColleenRae reacted to LexieCat in Hi from Sweden   
    CT scans do not "catch" every small nodule there might be in the lungs. I've had what I used to call "mystery nodules" that would appear on some scans and not show on others. The doctor told me that depending on the angle of the "slice" of the images, sometimes small nodules appear/disappear or slightly change in size from one scan to another. Did they light up on the PET scan? If not, they could just be scar tissue or something--most nodules people have in their lungs are not cancerous. 
    I believe chemo/immunotherapy are usually given at the same time. For some people, chemo might go on for a shorter period of time--if you have a good response, at some point you might get only immunotherapy. I don't know a whole lot about the treatment protocols for squamous cell.
    Either way, though, your immune system is likely to be compromised while you're undergoing treatment. That means that working directly with clients could be very risky for you. Sweden has, from what I understand, taken a "herd immunity" approach to the virus, so there might be a lot of people walking around with it (symptomatic or not). Discuss it with your doctor, but I don't think I'd want to take the chance.
  6. Like
    ColleenRae reacted to JamesB in Hi from Sweden   
    Thanks Lou for the tips and support!
    They did not take the vent from my sister yesterday.She is on a round of antibiotics and they are going to decide on Monday. At least my older sister and my nieces and nephew got to be with her yesterday and they held the phone up so I could say something to her.She is still under sedation.Praying for a miracle.
  7. Like
    ColleenRae reacted to Tom Galli in Hi from Sweden   
    James,
    Welcome here.
    I am the squamous cell guy Lexi referred to. Unfortunately, I’m away from my desktop computer and linking information is difficult on an iPhone.
    Navigate to my profile. The select blogs, then go to page 3 of my blog Stay The Course and find “10 steps To Survive Lung Cancer from a Survivor.” You can also Google the words inside the quotation marks. Unfortunately, it is pretty widely read.
    Bottom line up front, I’ve lived nearly 16-years since diagnosis so—if I can live, so can you.
    I didn’t see anything in your introductory post indicating you had a biopsy. I assume you did because you identify Squamous Cell but you said you were starting combination chemo with immunotherapy. Did your biopsy include testing for PD-L1 expression? That is normally a lab test that takes a couple of weeks to process. The percent of PD-L1 expression is a predictor for immunotherapy efficacy. I’m not acquainted with Sweden’s Health Care system or methods but some in the US do not receive follow-on lab testing of biopsy material and this is so very important to predict how modern treatment methods will work.
    So, how do you get through this? First, with our help. We are your support group! We are not physicians but I’d venture we have a monopoly on actual experienced-based lung cancer treatment. You’ll likely have side-effects and your doctors will prescribe medication to mitigate these, but we’ve already had the side effects and our “tips and tricks” might be very helpful. Indeed, this is the place to ask questions. For example, you might tell us the names of the drugs you will receive so we can alert you to our experience with the medications.
    Given your sister’s unfortunate medical condition and your forthcoming treatment slugfest, you may find yourself depressed. I ignored my depression convinced I could power through almost anything and failed miserably. Tell family or close friends to keep a close eye on you for signs of depression and if you show signs, seek treatment. 
    We have a Friday zoom session for survivors—you are one of those now! Our 12:30 p.m. Central Standard Time meeting is a convenient 7:30 p.m. Stockholm time. You are most welcome to join and meet us. Here is our zoom connection details: https://zoom.us/j/98137457405?pwd=NzZJTmR4OGdxZFF2VWNodnFDZXhGdz09  Meeting ID: 981 3745 7405; password: 255138
    Stay the course.
    Tom
     
     
     
     
  8. Sad
    ColleenRae reacted to JamesB in Hi from Sweden   
    Just stumbled on this site and the reading and encouragement looks great. Just got home from doc today and was diagnosed with stage 4 Squamous cell. Have an egg sized tumor in bottom right lobe.Found out today that there were also 2 small spots that lit up on the pet scan.Another small spot was found in my colon. Like everyone else I guess I am in shock and surprised that it is this bad.I know I am lucky in that it has not shown up in my bones or other places.
    Treatment plan is to start chemo and Immunotherapy  on Sept. 17th. I don't remember if they are going to do them both at the same time or separately. It's all overwhelming. I have felt fine only a cough since Feb. Still work and work out,  
    Too add to my stress my younger sister who is my usual rock just had a couple of small strokes-she was on dialysis and survived breast cancer and a kidney transplant as well. They are going to take her off her ventilator on Saturday. It is all just too much.
    I could use some hope.
    Thanks,
    James
     
     
  9. Like
    ColleenRae reacted to Deb W in So we have a plan...   
    Hi Lexie,
    Your treatment plan looks a lot like mine.  I think it's B.S. that they aren't testing for more mutations.  There are several good videos on this topic.  Yikes, I meant to send a link - didn't realize you'd get the video here.  I pushed for those tests.  I had Guardant & Foundations (which I learned about from the wonderful people on this site) and the GO2 Foundation, but I had to push for both when I was with the first Oncologist.  The blood biopsy didn't detect the MET mutation, but the Foundations test did.  
     It wasn't until I received a second opinion that the MET mutation was found (or should I say uncovered as the result was there right in front of the 1st oncologist), but I guess he didn't see it.  Anyway, since I already had the first infusion of carbo/Alimta/Keytruda, the new oncologist said the board wanted to keep me on that treatment and  didn't want to switch me to another drug right away (Tribecta for the MET Mutation).  Lucky for me, after the 2nd round there was shrinkage and after the 4th the word "clear" was used.  I was put on a maintenance plan that started 3 weeks ago consisting of Alimta and Keytruda.  I experience fewer side effects, but still the fatigue continues.  I fail to get clarity on the course of my treatment as it changes.  First I was told the Alimta would be discontinued  in  October and I'd be on Keytruda alone until 2 years passed.  Yesterday, in the beginning of my appointment that was the plan.  Now, I'm told they will keep the Alimta for 6 months.  I asked why the change and he said that since I am tolerating it we can continue.  The goal being eradicating an possible Micrometastases  (which is what happened to me after the lobectomy in 2019).  So, it looks like the Alimta will not be dropped until February.
    There are lots of people with smoking histories that get checked for mutations.  This seems like a real disparity.
    I wish you all the best, and keep us posted.  I'd be happy provide you with support as you go through the triplet journey - just let me know.
    Deb
     
  10. Like
    ColleenRae reacted to LexieCat in So we have a plan...   
    Yup, kiddos are here and we are having a great visit. They've helped out with a few things on my honey-do list.
    Tonight, my son is making carnitas tacos for dinner!
    I just discovered Penn Medicine offers a same-day virtual consult for new/prospective patients. I can also make a call this morning to RO #2, who I'm seeing on Friday, to see if they can suggest a way to see someone there quickly. I really don't want to delay starting treatment--it's been a few weeks already. 
  11. Like
    ColleenRae reacted to LexieCat in So we have a plan...   
    Ya know, that's pretty much what my own gut reaction was. On all three of our visits, he's seemed pretty close-minded and not very forthcoming--compared with my surgeon and the radiation oncologist I saw last week. I kinda feel less than confident in him, compared with those guys. 
    I think I'll see if I can get a consult in with a medical oncologist at Penn. Maybe they won't recommend anything different, but I'd like to get someone else's take on it.
     
  12. Like
    ColleenRae reacted to Steff in So we have a plan...   
    I'm glad to hear things are moving forward! My mom was on the same triplet and saw very quick results from it.  I am keeping my fingers crossed that you have the same results as she did! 
     
  13. Like
    ColleenRae reacted to LexieCat in So we have a plan...   
    Met with oncologist today and we decided to do the sequential chemo/radiation treatment--carboplatin/Alimta/Keytruda (four cycles, with scan after third cycle), then continue with Alimta and Keytruda while I start radiation. He still characterizes this as "less aggressive" than doing radiation at the same time, but the radiation oncologist was quite clear that he believed doing the radiation at the same time as chemo would be of minimal additional benefit. The RO believes the sequential treatment still represents the possibility of a cure. The medical oncologist, OTOH, seems not to view this as a curative course of treatment. He did tell me as long as I'm doing well and tolerating it that the Alimta and Keytruda could continue for two years. 
    I wasn't totally satisfied with our discussion about the molecular testing results. The testing was done by Neo Genomics, and the tests were for PD-L1 (result 5 percent), and they tested for ALK, BRAF, EGFR, and ROS1. I asked about whether liquid biopsy might provide any additional information and he was fairly dismissive about it. He said because I was a smoker (former) he really didn't expect to find any mutations and that they tested for those that were most likely to be "actionable." He said if I failed to respond to chemo/immunotherapy, or if I had a recurrence later, THEN they would consider doing additional testing. He seemed fixated on the testing that was done being "by the book," and I don't know enough about it to question that further. 
    Right now we're looking at starting chemo next week. He's going to see if there's any possibility my surgeon could get a port installed before my first treatment, but he said it might have to wait till after the first one--he didn't want to put off the first treatment until they could get an interventional radiologist to do it (which is who usually does it, apparently, but they are backed up). 
    He ordered several prescriptions--folic acid (daily), two anti-nausea drugs (as needed), and dexamethasone (taken day before, day of, and day after treatment). Gotta get blood work, another COVID test, and B-12 shot. 
    Dang. Looks like we're really doing this. 
    Still have my consult this Friday with RO #2 at Penn Medicine. Oncologist knew the guy--apparently at one time they worked at the same place.
    Rocking on...
     
  14. Like
    ColleenRae reacted to BridgetO in Precision radiation for lung nodules   
    Hi Colleen, I'm really happy to hear that you found a radiation oncologist that you trust and are comfortable with. I agree with Teri that you've really come far in living with the inherent uncertainty of this illness. Keep on keeping on!
    Bridget O
     
  15. Like
    ColleenRae reacted to Judy M2 in Finding my mum difficult to deal with   
    I can relate to catlady91's mom, as I lived through those dark days when I was at my lowest. Honestly, it was reading all the survivor stories on this forum (and progressively good scans) and also physically feeling better that changed my thinking. I have a disease that today is being managed well. 
    I think that after treatments are finished, you can feel sort of lonely and get into your own head with negative thoughts. No one else can really understand, even your closest loved ones. It will take your mom's mind a little time to catch up with the success of her treatments. Be patient with your patient.
    All the best, Judy
  16. Like
    ColleenRae reacted to BridgetO in Finding my mum difficult to deal with   
    Hi Catlady. Rant away! This is a good place to do it. Steff is right that you probably don't understand what your mom is going through. And she probably doesn't understand what you're going through, because the experiences and feelings on each side of this are different. I lived at a distance from my mom and when she broke her hip I went to stay with her and support her. At times she drove me up the wall, so I know how hard it can be to be a  caregiver and not to feel appreciated or understood. 
    Steff has had long term experience as a caregiver. Her take on this is excellent.
    Come here and rant or vent when you need to. We're here for caregivers as well as patients.
    Bridget O
  17. Like
    ColleenRae reacted to Steff in Finding my mum difficult to deal with   
    catlady91-
    My advice is to let your mom deal with her feelings about lung cancer the way she needs to - as long as she is not harming herself or others.  She is relatively new to lung cancer (if I am remembering correctly) and it takes some folks longer than others to get over the negative effects of a lung cancer diagnosis.  In the past 10 or so years, my family has had one death after another and then on top of it, my mom's lung cancer diagnoses.  With all of the turmoil in our lives, my mom decided to see a counselor.  During the first meeting, the counselor informed my mom that she was grieving - she was grieving the loss of her old life, a life before lung cancer and a life where her parents, brother, and best friend were alive.  This made total sense to my mom (and to me).  Your mom is likely grieving too and with grief comes negative emotions and thoughts which can result in undesirable behaviors (negative statements, no patience for anything, etc).  I know you are just concerned for your mom, but as long as she isn't harming herself or anyone else, maybe you should let her be and come to terms with her situation.  You can't change the way she is feeling or what she says.  But you also don't have to let her actions and statements upset you.  When she says that you don't understand, you probably don't. I don't either because I have never had lung cancer or any other major cancer diagnosis.  At the end of the day, none of this is about us.  This is about supporting our loved one during a very trying time.  
    Hope this helps,
    Steff
  18. Like
    ColleenRae reacted to catlady91 in Finding my mum difficult to deal with   
    Although my mum hasn't officially been declared NED, her tumour is gone and the doctor said there's a tiny area which is hard to see left behind which is either cancer cells or inflammation. He said if it's cancer cells, then the immunotherapy should take care of them. The doctor said that my mum's response to treatment has been excellent and the scan was excellent. He told my mum that she should celebrate.
    My mum is understandably upset as she wanted to be NED, but this is her first scan since May, which showed that the tumour had reduced by half! She had a PET scan at the beginning of August which showed that the tumour was all gone apart from the tiny area, which he doesn't seem concerned about. This is her first scan since starting immunotherapy. 
    My mum still seems to be quite depressed despite the good news. She has her good and bad days which is understandable. Today she was really negative. My brother and sister-in-law came around we were talking about summer being almost gone and next summer. My mum was like, "if I'm still alive next summer." It really upsets me that she thinks like this and she has no reason to think like this. I know that cancer is scary and there's a fear of death, but there's no evidence or anything that the doctors have said that indicate that she doesn't have much time left. The doctors are positive and have been from the start.
    I tell my mum that I don't want to hear such things especially as there's no evidence for it, but she just tells me off saying that I don't understand anything. I often feel alone, that nobody cares about my feelings. My mum wants me to go to therapy, but I don't want it. It's just more money and I've had a lot of therapy in my life. I feel that there's nothing that a therapist can say or do to make me feel better. When people suggest therapy, I almost take it as an offence as it's an excuse for people not to want to listen or care about me and it's just palming me off onto somebody else. Sorry for the rant. I just feel so alone sometimes and that my feelings are not valid.
  19. Like
    ColleenRae got a reaction from Judy M2 in Precision radiation for lung nodules   
    Just an update...
    I had my second consult with a Radiation Oncologist in Seattle - same hospital network where I had my lobectomy in 2018. I am so glad I got a second opinion.  Loved the R.O. I spoke with. The second sentence out of his mouth was that he was really surprised that our local cancer center was wanting to treat this suspicious spot so soon. He actually laughed and said how tiny it was. He did not talk at me - he talked with me. He did not dictate what the course of action would be but rather what route he believes is warranted - as long as I am comfortable with the plan. 
    In a nutshell - He agrees with my surgeon that this can wait. They do not want to over treat. He is very comfortable in waiting another 12 months for my next CT scan and stressed this is not life threatening. He said the bigger risk is in a recurrence in the right lung where I had my lobectomy, and scans have fortunately been showing NED. In 12 months, we'll see what changes have taken place. He said I will likely need to treat this with radiation, but they'd like to hold off for as long as possible. I will likely require fiducile markers. He will treat it with their Cyberknife equipment, probably 3x over a 3 day period. I asked him why my local clinic told me 5 sessions over 2 weeks (and the local clinic told me Cyberknife would not work as well; but they don't have Cyberknife)... He was quite blunt and said "Because they can get the maximum revenue by scheduling five treatments".  That summed up a lot for me. He also said he has seen three patients from my city in the past week (who are not going to our local cancer clinic for treatment). I told him how I received a call last week from the nurse navigator from our local cancer clinic, "reminding" me that I have cancer and being very pushy about my scheduling and starting my radiation treatments...  I was really taken aback by that call. Left me angry and in tears. I did not need to be "reminded" that I had/have cancer. I felt threatened and bullied because I said I wanted a second opinion.  After that phone call I had no desire to seek medical care for this locally. I am very grateful I can still access care in Seattle.
    The Seattle R.O. did not sugarcoat anything for me. He would not use the word "cure" (another point in my book!) either. We did talk about the likely possibility of treating lung cancer long term with spot welding treatments. He was optimistic that there may be new treatments in the not so distant future. What he helped instill in me was that they will not over treat; they will continue to watch and assess in order to help maintain my breathing and quality of life. I did not feel like this was a death sentence nor did I feel alone in this. He will let my surgeon know what we discussed and said he would like BOTH of them to follow me at this point. Am I nervous about waiting? Heck yes... especially when life has revolved around CT scans every few months for the past four years. To go one year will require a mindset adjustment. I'd like to have a year off from this, if possible, and even live a little bit in denial if I can
    I know there are no guarantees and this can all change, but I felt very grateful today. I know I will never be "cured" but there is also a very good chance that I might be able to live many more years with this. I am very glad I got a second opinion. It helps enormously to "connect" with your doctors.
     
  20. Like
    ColleenRae reacted to D iane in Surgery on Monday   
    I too think it is wonderful that 1-you could even have surgery for SCLC-that's HUGE, and 2-you seem to be recovering at a rabbit's pace!!!
     
    Best wishes to you
  21. Thanks
    ColleenRae reacted to Deb W in Not a bad scan day   
    T]
    Mine have always been with and without contrast as well.  As I recall a tech telling me, one reads the soft tissue better no sure which one though.
  22. Thanks
    ColleenRae reacted to BridgetO in Not a bad scan day   
    Low dose followup (surveillance) scans are generally without contrast, I think.
  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 BridgetO in Precision radiation for lung nodules   
    Just an update...
    I had my second consult with a Radiation Oncologist in Seattle - same hospital network where I had my lobectomy in 2018. I am so glad I got a second opinion.  Loved the R.O. I spoke with. The second sentence out of his mouth was that he was really surprised that our local cancer center was wanting to treat this suspicious spot so soon. He actually laughed and said how tiny it was. He did not talk at me - he talked with me. He did not dictate what the course of action would be but rather what route he believes is warranted - as long as I am comfortable with the plan. 
    In a nutshell - He agrees with my surgeon that this can wait. They do not want to over treat. He is very comfortable in waiting another 12 months for my next CT scan and stressed this is not life threatening. He said the bigger risk is in a recurrence in the right lung where I had my lobectomy, and scans have fortunately been showing NED. In 12 months, we'll see what changes have taken place. He said I will likely need to treat this with radiation, but they'd like to hold off for as long as possible. I will likely require fiducile markers. He will treat it with their Cyberknife equipment, probably 3x over a 3 day period. I asked him why my local clinic told me 5 sessions over 2 weeks (and the local clinic told me Cyberknife would not work as well; but they don't have Cyberknife)... He was quite blunt and said "Because they can get the maximum revenue by scheduling five treatments".  That summed up a lot for me. He also said he has seen three patients from my city in the past week (who are not going to our local cancer clinic for treatment). I told him how I received a call last week from the nurse navigator from our local cancer clinic, "reminding" me that I have cancer and being very pushy about my scheduling and starting my radiation treatments...  I was really taken aback by that call. Left me angry and in tears. I did not need to be "reminded" that I had/have cancer. I felt threatened and bullied because I said I wanted a second opinion.  After that phone call I had no desire to seek medical care for this locally. I am very grateful I can still access care in Seattle.
    The Seattle R.O. did not sugarcoat anything for me. He would not use the word "cure" (another point in my book!) either. We did talk about the likely possibility of treating lung cancer long term with spot welding treatments. He was optimistic that there may be new treatments in the not so distant future. What he helped instill in me was that they will not over treat; they will continue to watch and assess in order to help maintain my breathing and quality of life. I did not feel like this was a death sentence nor did I feel alone in this. He will let my surgeon know what we discussed and said he would like BOTH of them to follow me at this point. Am I nervous about waiting? Heck yes... especially when life has revolved around CT scans every few months for the past four years. To go one year will require a mindset adjustment. I'd like to have a year off from this, if possible, and even live a little bit in denial if I can
    I know there are no guarantees and this can all change, but I felt very grateful today. I know I will never be "cured" but there is also a very good chance that I might be able to live many more years with this. I am very glad I got a second opinion. It helps enormously to "connect" with your doctors.
     
  25. Like
    ColleenRae got a reaction from Tom Galli in Not a bad scan day   
    Tom,
    Wish I had seen this yesterday, but now I'm reading "backwards" - and at least I know what the great outcome was!  
    You always seem SO strong and calm; helping so many of us with sound, intelligent, scientific advice and info.  I think we forget that you know all about Scanziety and that you, too, experience the same feelings we all share here!
    I have a question, if you don't mind - You stated your CT was with contrast. My CT's have always been without contrast. Do you know what the reasons are for choosing one over the other?  (I shouldn't bother you with this; I can look it up as well...!)
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