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ColleenRae

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  1. Like
    ColleenRae reacted to Rower Michelle in Excellent response to treatment   
    That is great news!  Oncologists seem to be intuitively ahead of the radiologists when reading the scans and assessing scar tissue.  My doc thought my tumor was scar tissue in February, 2019, but the radiologist didn't draw the same conclusion until May, 2020.  The treatment combination you Mum has received is with curative intent, sounds like she's well on her way!
    Michelle 
  2. Like
    ColleenRae reacted to Donna G in Excellent response to treatment   
    We so enjoy hearing Good News !
    Donna G
  3. Like
    ColleenRae reacted to Deb W in Excellent response to treatment   
    Great news.  I don't know what your Mom's treatment consisted of, but I also had a good result after 4 treatments of Alimta/Carboplatin/Keytruda.  My scan was clear and I was put on maintenance which consists of Alimta/Keytruda for another 2 months and then Keytruda alone for 2 years (from the date of the original diagnosis).
    Deb
  4. Like
    ColleenRae reacted to catlady91 in Excellent response to treatment   
    My mum went to see her doctor today and he said that her response to treatment has been excellent and that he's 100% happy with her results. There's very little left of the original tumour. Before treatment it was 37mm (3.7 cm) and now it's 3mm (0.3 cm). He said that there may still be scar tissue or remaining cancer cells but they don't know. Hopefully the immunotherapy will get rid of the remaining cancer cells if there are any left. 
    I thought that I'd share the update. The report has finally been written up by the specialist radiographer. With the remaining cells if there are any, do you think that immunotherapy will get rid of them? 
  5. Like
    ColleenRae reacted to BridgetO in New - Scared   
    You are not messed up! You're just human. We all have our individual quirks and things we're scared of. I'm afraid of needles in my mouth. Not afraid of needles otherwise. I became able to tolerate them, first by having nitrous oxide first (for years). Now I  ask my dentist to let me know when the needle is coming, so I can close my eyes. It's more tolerable if I don't see it coming. 
    You can do this!
    Bridget O
  6. Like
    ColleenRae reacted to LouT in New - Scared   
    Barbara,
    I just saw GaryG's message to you and he is absolutely on target.  I will not tell you what you should do, but I will tell you that many of the chemicals found in cigarettes have a direct effect on the DNA of cells in your lungs and can cause mutations that will accelerate the development of cancerous cells.  At this point you have already "crossed the line" where cells appear to have been affected.  You need to make the choice about smoking or not.  One cigarette a day on cells that have been exposed to cigarettes, in all probability, will have an affect on those cells.
    As I said, you can do as you will, but I'll be praying for you to have the strength to quit.  Either way, we are here for you.
    Lou
  7. Like
    ColleenRae reacted to GaryG in New - Scared   
    Barbara:    You say "do you think it's an issue that I'm still smoking  one cigarette a day?  "
    I am sorry to butt in but I feel I have a lot to contribute when it comes to smoking.
    I tried to quit for 10 long years and in the process I went to hypnotists, week long stop smoking camps organized by reputable hospital, quit cold turkey, use nicorette  gum and patches, acupuncture and all sorts of quit smoking gadgets and tricks. I am not a very smart person but smoking I can write a book about. 
    To answer your question about smoking just one cigarette/day  nicotine is an addiction therefore our body  gets it's fill whether we smoke one cigarette/day or 50. The body takes what it needs. The same goes for smoking filtered or menthol.  As a matter of fact if you are a smoker your body will even satisfy the craving from people smoking around you. 
    After many trials and error here is how I quit.
    1-  I admitted that I was an addict and a weak addict to boot. I was  sick and out of control.
    2- I needed nicotine completely out of my body so I drank cranberry juice concentrate  (not the cocktail) and that kept me close to the bathroom. Cranberry juice is a cleanser also good for fighting infections.
    3- When ever I had the urge to smoke I exercised till my body was very tired. That calmed my nerves and kept the urge to smoke at bay.
    4- Here is the good news it only takes 3 days to cleanse your body from nicotine. From there on you are off the hook.
    5- To stop smoking all you have to do is not smoke that FIRST cigarette.
    I quit smoking 35 years ago and never looked back. If you have any questions please let me know and I will try to help.
  8. Like
    ColleenRae got a reaction from Tom Galli in New - Scared   
    Thank you for the update Barbara... I can "hear" your stress, but as others have said - You really can do this. You can get through the procedure and you can quit smoking. We are all here to support you. Sounds like your husband will as well since he's already taken that big step!
    One thing that worked for me (in addition to a firm mindset) was to breathe deeply whenever I thought I wanted a cigarette.  I would just stop and take several deep breaths and it would relax me. It was actually very similar to what I used to do with a cigarette / why I smoked to begin with. The only thing missing was the actual cigarette. Try cutting a straw down in size and take a "puff" on it instead of a cigarette. Maybe the action of holding the straw alone will help.
    I would not focus too much on what the nurse told you about the chest tube. After-all, she did say pain medication will be given!   Seriously - things were a real blur those first few days for me. I just remember waking up after the procedure and seeing my son sitting in the corner of my hospital room and I was just so grateful... that was the only, really important thing that mattered to me. My biggest fear was anesthesia or that something would go wrong with the surgery and I would never see him again.  The rest of the stuff after surgery (blood work, x-rays, chest tube removal, etc.) just came and went and left no traumatic memories.  I had my lobectomy without a 100% guarantee that the lobe had a cancerous nodule, so it was a gamble in some ways. It was cancer and, surprisingly, I was grateful. Grateful that it was cancer so that I didn't have it removed for no valid reason. Grateful that it had been caught early. After that - nothing else really mattered other than I was happy to be alive. I just wanted to walk and get back home as soon as possible.  Save your energy for that!  I am not good at following this myself - but nevertheless - remember: The only thing we have to fear is fear itself.  That can be applied toward chest tubes and giving up that last cigarette!
    I am curious as to how you are going to be able to drive yourself home after four days in the hospital???  I have a feeling you've been taking care of others... Please enlist help from others if you can.
  9. Like
    ColleenRae reacted to Babs in New - Scared   
    Hi Barbara,
     
    Sorry for the late welcome here.  I have been reading all the posts but have been busy restarting my treatment for a recurrence of my cancer.  I was diagnosed  1 year ago with stage IIIa nsclc.  Went through chemo/radiation and then on immunotherapy Durvalumab for 16 doses.  Cancer came back in July but has not spread.  Just had my 1st treatment with Carbo/Taxol/Keytruda last Friday.  Dealing with some not so nice side effects right now.
    I like you was terrified of going to seek any kind of medical care.  In fact I didn’t see a Dr for probably close to 30 years until my neck swelled so bad I went in to urgent care and here I am.  I am now completely over the “white coat syndrome”.  It doesn’t take much once you are engulfed in your journey. I was a 40 yr smoker and after being diagnosed I quit but it was with the help of both Chantix and a nicotine patch which I wasn’t aware you could do both.  My Onc said yes and now my husband also quit the same way.  He got tremendous push back from his primary for wanting both, but they agreed and now we are both ex smokers.  Quitting is the single hardest thing I have done.  Smoking is also the biggest regret of my life. You can do it, you know you can.  
     
    I wish you luck tomorrow.  I know how hard it is to face your fears. I will be thinking of you,
    Babs
  10. Like
    ColleenRae got a reaction from Tom Galli in New - Scared   
    Barbara... Just checking in! Sorry it's been a few days; dealing with some issues here at home but have not forgotten you.
    I'm not sure where you are in this process right now... You had mentioned you were going to get blood drawn - did that take place? How did it go?
    On August 16th you wrote: "Next week I'm going for a Wedgectomy (is that the  right word?) with the possibility of  a Lobectomy depending on the results after  they take the first chunk out."  I'm afraid I might have missed your date for this if it took place last week... If so, I am very sorry! 
    When you get a chance, can you give us an update on how you are doing? Did you have any procedure(s) yet? How did your blood draw go? 
    Wishing you the best!
    Colleen
  11. Like
    ColleenRae reacted to Mamma Om in New - Scared   
    Hi Barbara, I want to reply to your question about smoking one cigarette a day. Everything people have already written is true. Even one is a danger. I smoked a pack a day for 27 years. I quit once for 3 years, then went back to it. I used to say I was an expert at quitting because I did it so often. But the day of reckoning eventually came. It was my 45th Birthday and I was sick, again, with bronchitis. I decided to just not smoke for that day, in the hopes I would feel better. The next morning I went to grab a cigarette and thought that I hadn't smoked all the previous day, maybe I could do it again for one more day. Every day after that, I would decide if I was going to smoke or not. I could not face thinking that if I really quit I would never be able to smoke again for the rest of my life. So I quit "One Day At A Time".  Now it's been 30 years since I quit, and the truth is, there are still times when I miss smoking a cigarette. It's true you get over the physical craving in 3 days, but the psychological craving takes a lot longer. And remember, when I quit people were able to smoke everywhere: hospitals, restaurants, parties, schools, EVERYWHERE. So was always surrounded by people smoking. Now, the bad news is that those 27 years that I smoked, along with genetics and bad luck, has left me with asthma, COPD, and two kinds of lung cancer. But I really believe that if I hadn't quit when I did I wouldn't be writing this today. Best wishes to you and we will be here for you no matter what you choose. Mamma-Om
  12. Like
    ColleenRae got a reaction from Lisa Haines in Now VIRTUAL! 2020 International Lung Cancer Survivorship Conference | August 21-23 | Rockville, MD   
    I plan on attending as well and I, too, am researching radiation treatment that has been recommended, so this IS great timing.  It's my birthday weekend, so my son said he'd even attend (I believe I saw there is a breakout for caregivers) to learn things and be supportive. Thank you for providing this online!
  13. Like
    ColleenRae got a reaction from Tom Galli in Precision radiation for lung nodules   
    Pattymac ~ Thanks for updating us! Glad to hear everything is going well and from what you've described, it sounds very straightforward and easy as compared to other treatments!  It's really nice to hear the optimism and relief in your voice here - knowing you will finally be addressing this lurking beast!  
    LexieCat ~  Insurance companies. I think we forget to talk about that here on these forums. Sometimes that is the most exhausting part of all. Infuriates me the hoops that one must go through. A medical insurance rep who didn't seem to know what a radiation oncologist is... Why am I not surprised?! Just glad the additional consult will be covered. That is one hurdle passed and gift along the way for you.
    I spoke with my surgical oncologist who has been following me since he performed VATS two years ago.  He is not in disagreement that this 8mm nodule in the left upper lobe is likely a slow growing cancer. As he's told me before, however, he does not believe it needs to be treated now unless I cannot live with the knowledge that it is there and insist I want it gone.  His reason for this:  He said the philosophy his clinic/hospital/peers follow is a conservative one and they make every effort to not over treat. He said there are risks with radiation - in particular pneumonitis / fibrosis / radiation scarring.  He said his advice to me would be to wait and see where this tumor is next summer. It is growing slowly. It has not become more dense. He said he can say with certainty that he is not concerned with treating it right now. He would  rather wait a little longer rather than have me undergo another procedure and experience any risk that might affect my quality of life.
    He firmly believes radiation will take care of this nodule.  He also said due to this nodule's small size, they may have to place fiducial markers prior to radiation - and they would likely do a biopsy while they're at it. He said I should ask the radiation oncologist if the tumor were to increase in size if that would eliminate the need for the fiducial markers, which would add to the argument of holding off for a bit.  He said he would be very comfortable in treating this nodule now without a biopsy, given what he knows about the previous one removed, which is why he's also comfortable with me waiting to treat it.  
    My surgeon said he would provide a referral (I said I wanted one) to one of their radiation oncologists for a second consult. He encouraged me to ask the RO about the skill level /reputation of our local cancer clinic and the RO I had seen.  I expressed concern over the difference in treatment approach; something I've been encountering for the past four years between our local clinic and the larger clinics in Seattle (frustrating and confusing to say the least!). I voiced my concern that my decision on where to get treatment might be dictated by how I could access it, as I did not see how I could drive every other day to Seattle for almost two weeks (approx. 4-5 hrs drive each day). I'd have to stay in a hotel, which would be very costly, even at the medical rate. He said their facility does have Cyberknife (our local clinic does not; they do have SBRT) and he believes they could treat this in fewer treatments - possibly even one - with Cyberknife. He said they do this frequently for patients like myself who live out of the area.  I would much rather have 1-2 treatments versus a week and a half, if this is correct, however, I think I remember the local RO telling me they parcel the radiation treatments out to 5 to avoid side effects...
    I am grateful I have more time to explore my options and I do want to speak with another RO (and maybe even another one at the Univ of WA). The surgeon said things are changing so rapidly that if we wait until next year there may very well be even more new treatments. He said he will continue to monitor me / my chest CT's until I move forward with radiation - then he hands the reigns over to the RO. I found that hard - I didn't realize how much I'd come to depend on him and how much trust I actually have put in him until he said that. I told him I wasn't quite ready to have him let go of my hand yet...!  He said once the lung is treated with radiation it takes a very skilled and experienced professional to be able to correctly read and follow future x-rays / scans, due to the changes in the lung from radiation.  After attending the Radiation 101 session this a.m. at the conference, I saw exactly what he was saying (the presenter provided films showing how radiation affects the lung over the course of months). 
    So, I can tell that I will need to wean myself from my surgeon in the not-so-distant future.  I just want to make sure that once my care is transferred to someone else, that it is someone I feel confident in. That hand-off is going to be vitally important to me and my peace of mind. As far as waiting on the tumor, for some reason I feel pretty calm. (Now I wish I'd followed through and bought the house we just backed out of! )I'd like to know the nodule was gone, but if I can hold off for a bit that is fine, too.  I want to hear what the second consult has to say first about treatment, risks, quality of life , anticipated effect on breathing, etc. 
    I'm grateful I may have a choice in this as I make my decision(s). I think that is a common thread between Pattymac, LexieCat - all of us - right now... We're all actively seeking information and want to be able to decide in the course of our treatments as much as we can be.  I'm learning that that "control" - or actively /feeling of being involved - is vitally important to how we deal with our diagnosis of lung cancer.  
    I look forward to following both of your experiences, Pattymac and LexieCat... Thank you so much for the time you take to share your stories and information. My thoughts are always with you.
     
     
  14. Sad
    ColleenRae reacted to LexieCat in Precision radiation for lung nodules   
    Sounds great for you--keep us posted! 
    I just called my insurance company--just to be on the safe side--to make sure there were no surprises in terms of coverage for this additional consult. 
    The rep at the insurance company didn't seem to understand what a radiation oncologist is, and I had to look up the provider for her so she could confirm this doc/facility is a participating provider. I'd already checked that--I kept telling her I'd already confirmed the doc/hospital were in-network, but you know bureaucracies. The call took at least twice as long as it would have if she'd known how to look something up on their own website. *smh* If the patient reps can't look stuff up, how do they expect patients to??
    Bottom line, no problem getting consult--just problem with knowledge of rep on the other end.
  15. Like
    ColleenRae reacted to Pattymac in Precision radiation for lung nodules   
    Thanks you so much ColleenRae, I forgot to mention this yesterday that I did ask my radiation oncologist yesterday why I was just hearing (Last week) about SBRT for some kinds of lung cancers And he said.....surgery has always been the gold standard for lung cancer and radiation has been in the background, he thinks for far too long! Radiation today is a far cry of what it was 30 years ago, very precise with very good outcomes, he says my nodule will be history when I’m done. Also he said they use radiation for many kinds of cancers, and many times for palliative care if their cancer is affecting their quality of life! I’m not a big fan of Ct scans, but I’m glad I can move forward with treatment this way!! I will post tomorrow!
  16. Like
    ColleenRae got a reaction from LexieCat in Precision radiation for lung nodules   
    Completely understand! My local doctor wanted me to get a biopsy that was quite risky before getting the lobectomy and I refused. The risks were too high, and I would likely need the lobectomy regardless of what the biopsy said. I hear ya... The waiting and watching and feeling of not doing anything is very difficult. I like your attitude of taking charge and being able to make a decision.  The last time I spoke with my surgeon, he was very encouraging regarding the success of SBRT. I am looking forward to hearing how your CT simulation goes... Thanks for leading the way for me (and others) on this!  I truly am rooting for you and know that I am going to be tailing behind you!   Good luck! I plan on attending the Survivorship Conference session on radiation 101 on Friday to learn more... Will be thinking of you Pattymac!
  17. Like
    ColleenRae got a reaction from Tom Galli in Precision radiation for lung nodules   
    Completely understand! My local doctor wanted me to get a biopsy that was quite risky before getting the lobectomy and I refused. The risks were too high, and I would likely need the lobectomy regardless of what the biopsy said. I hear ya... The waiting and watching and feeling of not doing anything is very difficult. I like your attitude of taking charge and being able to make a decision.  The last time I spoke with my surgeon, he was very encouraging regarding the success of SBRT. I am looking forward to hearing how your CT simulation goes... Thanks for leading the way for me (and others) on this!  I truly am rooting for you and know that I am going to be tailing behind you!   Good luck! I plan on attending the Survivorship Conference session on radiation 101 on Friday to learn more... Will be thinking of you Pattymac!
  18. Like
    ColleenRae got a reaction from Pattymac in Precision radiation for lung nodules   
    Pattymac ~ Very glad to hear your appointment went well! It is important that you feel confident in your provider and in the treatment you have chosen.  When do you plan on receiving treatment?  The radiation oncologist I saw yesterday said I do not have to do this right away (8 mm nodule) but he would not wait one year.  He said he was sorry to hear I backed out on buying a house as the treatments should not be difficult. I was sorry as well, but still a good thing as I would not have wanted to drive 2+ hours by myself every other day (with four border crossings each round trip!) for two weeks!  I'm looking forward to speaking with my surgeon tomorrow to help in my decision.
    Pattymac - What did your doctor say about side effects or possible risks? When I met with the RO (radiation oncologist) yesterday, I asked him what risks or side effects there might be.  Due to the location of my nodule (upper left apex), he said there really aren't any concerns, with the exception of an increased risk of brachial plexopathy (a form of peripheral neuropathy) which can be quite painful and there is the risk of the damage being permanent.  He did not indicate any other risks.  I still felt I needed to know more, so I did some research last night and it appears there is a risk for radiation pneumonitis, and that the most important risk factor to develop severe radiation induced pneumonitis is interstitial lung disease. I recall one of my earlier radiology reports mentioning ILD after a scan, so I want to look into this further so I can truly understand and be prepared for this risk should it arise.
    Will you be having a biopsy prior to radiation? Again, I'm just curious.  (I'm looking forward to the Lungevity conference this weekend for more info in the radiation session!) The RO I saw said they would normally do a biopsy to confirm the nodule is cancer before starting treatment, but since this looks like a duck... and given I have now had a similar, confirmed cancer... it is likely we know what we're dealing with (Bronchioloalveolar carcinoma (BAC)). He said there were risks with the biopsy. However, he also said that I will need to be seen prior to scheduling radiation to see if they can even see this nodule by positioning me, etc. If they can't, I will need to have the fidicuary markers placed prior to treatment - and he said they would then do a biopsy during that procedure.
    I think it's fantastic (and the latest reports look very encouraging) that SBRT is an option, but I want to proceed with some caution and obtain more information. I asked the RO what "stage" I am considered to be in now. I was Stage1a N0M0 after my lobectomy. He said without a biopsy, they really don't know. My scans do not indicate any lymph node involvement or spread of the cancer, but this can't be confirmed if we just solely go forward with radiation. Zapping the nodule sounds very encouraging in eliminating the sucker, but as this would be my second treatment (after lobectomy), I think I want a little more information. The RO said he has had patients he has treated with multiple, repeated SBRT over the course of years - he said he's had one patient he's treated approximately 11x with SBRT over the past 14 years. That is encouraging, but I'm also interested in knowing what the long term effects on quality of life, breathing, etc. might be. He did say I would not need chemo for this nodule; SBRT will kill it. He was positive of that. He also said that there are studies coming out that are showing SBRT starting to slightly exceed lobectomy positive outcomes.  I asked him why I was being referred for SBRT (versus surgery, as I have not been told I'm not a candidate for surgery nor did I say I did not want surgery). He never really answered my question... Doesn't matter that much; I was just trying to find out if I was no longer a candidate for surgery - for reasons I might not be aware of - so I'll know it's no longer an option for me for future treatment. Radiation would be an easier option for me given my personal home situation vs surgery in another city again.
    So... I may post more after I speak with the surgeon.  I'm sure all that I have posted here is nothing new to those who have been down this path. It's probably just helping me to sort through this by writing it all down here in a post.
     
  19. Like
    ColleenRae reacted to Barbara H. in New - Scared   
    and hiking boots  had  me cracking  up and  thinking what a  sweet son you have!!! 
  20. Like
    ColleenRae got a reaction from LexieCat in Precision radiation for lung nodules   
    Glad you are able to get another consult / opinion. Really sounds as if you have some great options there in NJ.  Keep being proactive. You are an inspiration!
  21. Like
    ColleenRae got a reaction from Tom Galli in New - Scared   
    Barbara - I don't have any good advice for calming a fear of needles... Best advice I can give is just don't watch and try not to even see the damn needle!
    Really... Try not to worry.  The things you are worried about really are the tiny things.
    Yes - you should quit smoking. That's my opinion. If your Doctor didn't advise, I know your anesthesiologist for the surgery will prefer that you've stopped.  Plus... If you quit now you will already have a head start on the nicotine withdrawal (which you likely have since you've cut back to one... that's awesome!) You won't be able to smoke in the hospital and you probably won't feel like it. "They say" your recovery will be much better and faster if you quit.  But... I completely understand if it helps you to still have that one cigarette to help calm your nerves right now. I won't judge, but I will encourage you to stop
    I did not care what I had on, to be honest, after surgery. You likely won't be there very long. I walked around in my gown and just made sure my back side was covered! I found another patient, an older man, who also had lung surgery, and we would walk the floor together. Neither of us dressed up for the outings!
     
  22. Like
    ColleenRae reacted to Pattymac in Precision radiation for lung nodules   
    Went to a radiation oncologist this morning, liked him very much and I also am going ahead with SBRT for my nodule! Thank goodness to have an option other than surgery! He said it will be 3-5 sessions over a week and a half, luckily he said there is no hurry for me to do this, he said my cancer is very slow growing, but I want it over with asap!! Thanks for posting all the info about SBRT, I appreciated it greatly!!
  23. Thanks
    ColleenRae reacted to Tom Galli in Precision radiation for lung nodules   
    ColleenRae,
    It is fine to post this information and it does cover SBRT.
    I believe the number of treatments and interval vary from person to person. In my case, I had 3 treatments each day for 3 days. The chart in your source does describe the process.
    Stay the course.
    Tom
  24. Like
    ColleenRae got a reaction from Tom Galli in Now VIRTUAL! 2020 International Lung Cancer Survivorship Conference | August 21-23 | Rockville, MD   
    I plan on attending as well and I, too, am researching radiation treatment that has been recommended, so this IS great timing.  It's my birthday weekend, so my son said he'd even attend (I believe I saw there is a breakout for caregivers) to learn things and be supportive. Thank you for providing this online!
  25. Like
    ColleenRae reacted to LexieCat in Now VIRTUAL! 2020 International Lung Cancer Survivorship Conference | August 21-23 | Rockville, MD   
    This is actually great timing for me, as I don't yet have treatment planned. The sessions on "Radiation 101" and "Chemo 101," etc. will be very useful as I try to get up to speed on what's up with all these treatment modalities.
    I def. plan to be there--already told my boss I'd probably be out at least part of Friday.
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