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  1. Today
  2. Lin wilki

    Kate7617

    It does get better for some. Too many variables in treatment and it seems like a crapshoot until they hit on a good one. Everyone is different all we can do is keep trying Hang in there!
  3. Been awhile, I came back about two weeks ago after a notification about a new post in my introduction post, but it seems to have gone missing. I wonder what happened? I will say that the content in said notification seemed like it had nothing to do with my post... Anyway, I've now met my radiation and medical oncologists, had a brain scan that was negative, and had the PET scan today, I should get the results tomorrow at my appointment with the pulmonologist. Right after that appointment, I meet with the radiation onc for the simulation test. I asked at the last appointment what the goal of his treatment plan is. Cure? Control? Relieve symptoms? Without missing a beat, he says “cure.” He goes on to say that this could also mean treating it as a chronic condition depending on a whole host of factors that we don't yet know, but he seemed optimistic. The next day, back with the medical onc. She ordered genetic testing to see if there are any, that will take about three weeks to get back, but no rush obviously, I have more than enough to do right now. So far, the original diagnosis of Stage IIIa has held, and both oncologists feel good about that remaining the diagnosis, but the PET will shine a light on that. If all remains the same, then I will likely begin treatment the following week: Radiation - 5x a week for 6 weeks Chemo - 1x a week for 6 weeks (radiation and chemo are concurrent) Immunotherapy - Every three weeks or so when chemo/radiation is complete
  4. Kate7617

    Kate7617

    Hoping that everyone is hanging in there! Went to follow up today new Doc, After PET scan on Friday, So good news the "nodule" or perhaps scar tissue or perhaps a lump that has a trace of cancer, perhaps. Hmm Back to square one durva or be checked every 3 months with another PET scan. No evidence of cancer in lymph nodes, Help I am beginning to have not such good feelings towards Doctors. This road is rough and it doesn't get better it seems. I am all ears, thanks!
  5. I'd take more chemo. Taxol + Carboplatin isn't that bad. I had no hairloss. I had 12 cycles of Folfox ( Oxaliplatin + Fluorouracil) for Stage 3 Colon Cancer in 2007. That was really nasty. I counted them up and I have now done 26 cycles of 4 different chemo regimes.
  6. Hi Jay. I had an upper right lobe lobectomy at the end of February. I was Stage 1. I didn’t have any prE or post treatments. I asked about a round of chemo to clean up anything they couldn’t see but the doctors wouldn’t do it. If they would have offered it I would have had it done. I see that there was a mass on your lung from three years ago that was not identified. The pneumonia thing sounds like a bit of an excuse. My father had a chest X-ray a little under a year before he was diagnosed. He was diagnosed at Stage IV. When his doctors went back to that XRay they pointed out the tumor that the previous doctors missed. It was considerably smaller. He unfortunately passed away from his disease. His widow won a pretty substantial lawsuit that he started when he was alive and was settled after he passed. I am not a proponent of frivolous malpractice lawsuits but in my fathers case those months between the original XRay and his diagnosis could have been the difference for him. You might at the very least want to let the doctors who read those original scans know what they missed. This disease is often missed or assumed to be something else.
  7. I’m hoping for the best Ken. Hang in there!
  8. Curt

    Bilobectomy

    I had an upper right lobe lobectomy at the end of February. I find that if I try to exert myself too quickly I get short of breath and sometimes dizzy. If I increase my heart rate slowly I don’t get either. I am no doctor but I disagree on the aerobic exercise front. It may not be the cure but it certainly can’t hurt. Meditation may also help with your heart rate. Both may do nothing or they may do something. Either way it’s not a bad way to fill some time each day. Hang in there. I hope things improve soon.
  9. Yesterday
  10. Hi JC, I have an issue with the high heart rate also. I now from reading here I am not sure if it is from lobectomy or from Chemo or anxiety or all of the above. This can happen with just chemo alone... http://www.cancer.ca/en/cancer-information/cancer-type/childhood-cancer-information/watching-for-late-effects/heart-problems/?region=ab I do not currently have blood pressure issues for now but after my 1st chemo I became dehydrated and all of the sudden my heart rate increased to 80's and anxiety really set in. I was very concerned and after discussing this issue with my ONC I had a heart Echo done A+ heart is healthy. Then after completing my 2nd infusion just two weeks ago Cisplatin/Paclitaxel now I have a higher heart rate at rest high 80's - 90's and 120's after exertion. Take care and I do hope we have heart rates lower soon. Darla
  11. JC63

    Bilobectomy

    Hi BridgetO, I spoke with the cardiologist and he thought it would eventually stop. I have an appt for a Holter monitor on Wednesday to rule out other causes. Hopefully, this will not be permanent. I'm also upset about the ringing in my ears from the cisplatin and hope to get the chemo changed over to something else. Thanks! JC
  12. Hi JC, If pulmonary rehab doesn't help with this, you might ask for a referral to a cardiologist.
  13. Thank you JayGEE! I'm calling the clinic today and will ask about that combination as well as Robert's suggestion for PT 112.
  14. Off we go - or not, into the wild blue yonder. It seems that my most recent CT scan's results, described as "a little worse" by my oncologist, are indeed cause for some reflection and change. (I'm not quite able to say "cause for concern" yet.) As such, to make the most effective change, per my oncologist's orders, I am scheduled for a needle biopsy on the Wednesday this column publishes. This procedure will determine, if there is a match, to the specific type of cancer tumor that I have. (Without boring you with too many details, the short version is that all cancer tumors are not alike. Biomarkers/genetic mutations such as ALK, BRAF, EGFR, NTRK, PD-L! and ROS1 are the most common, and certain medicines work better against certain tumor types. Variations in the tumor types, such as the ones I've described, is a relatively recent discovery in lung cancer research.) What this research has led to is another new kind of cancer treatment known as "targeted therapy." This means rather than "flying blind"--to use one of my brother, Richard's, favorite expressions--and employing a one-size-fits-all kind of approach to treatment, oncologists now have specific medicines to infuse when the tumor's genetic mutation is confirmed. Wednesday, hopefully, will confirm something. However, researchers have not discovered all the tumor types so it's possible that this biopsy will reveal nothing useful for me and in effect, I'll be back to square one-ish. As for what 'square-one-ish' means? It means that I'll likely be infusing medicines that previously worked for a time but whose infusions were stopped after they all ran their successful course years ago. As I've been told whenever this change became necessary, cancer cells eventually figure out what's happening to them and then the tumors begin growing. Once this growth is indicated on the CT scan, a new medicine is usually started, and on and on it goes until, apparently now, for me anyhow. "Targeted therapy" offers lots of new medicines. I just need a match. Unfortunately, there's no guarantee the biopsy will provide just such a match. There's only one way to find out. On Wednesday, we will begin to find out. To say I have a lot riding on this determination is the understatement of the year; at least for Team Lourie, it is. If I'm forced to repeat infusions from medicines that stopped working years ago, it'll be "Katie, bar the door," as we say in Boston which means, "Look out!" I'm trying not to 'look out' though. I'm trying not to look anywhere, except straight ahead. Just because my life may be at stake, is no time to deviate from the norm that has been my modus operandi over the past 11 years. I'm not quite ready to consider that my stage IV lung cancer survival is coming to an end. Maybe it's just staggering and within a week or so, I'll get my bearings again. New medical information getting me new medical treatment is sure to put a bounce back in my step. For the first time in 11 years, to quote George Costanza from Seinfeld: "I'm back, baby." This could be the jolt my body needs to get me through to the next research level. The Team Lourie strategy has always been for me to try and live long enough to reach the next medical breakthrough. So far, I've benefited from a few: tarceva, avastin and alimta; all miracle drugs according to my oncologist, and here I am, living proof that it has all worked. Until I hear, post procedure, from my oncologist, in the interim, I am re-experiencing many what-happens-if-and-when emotions that I've not wrestled with for years. Unfortunately, this hospital visit is taking me back to the visit/biopsy I had in Feb. 2009 which confirmed the malignancy in my lungs in the first place. And here I am, hopefully not in the last place, waiting for the results of a biopsy yet again. It didn't work out so good in 2009. I just hope I have better luck in 2019.
  15. Thank you for your response. That does make sense. I wanted to make sure i was being practical and not overly optimistic. I’ll be keeping my fingers crossed.
  16. That makes sense to me. The PET can show if the area of concern is potentially cancer (this time of year lymph nodes can swell in cold/flu season). So the PET can serve as an initial evaluation. The oncologist is probably trying to determine if the lymph node is inflamed due to an infection with the hopes a biopsy proves unnecessary. One day at a time, one test at a time. Hang in there.
  17. Hi JC - I had a similar experience during treatment. After 2 rounds of Cisplatin+Alimta, I developed tinnitus. My oncologist switched me to Carbo+Alimta for the 3rd round to address the issue. Researching online, it looks like Cisplatin definitely has hearing loss as a "common" side effect, along with ringing in the ears (tinnitus). See http://chemocare.com/chemotherapy/drug-info/carboplatin.aspx Regarding Carboplatin, online it shows hearing loss as "less common (occurring in 10-29%)", and does not indicate tinnitus as a side effect. See http://chemocare.com/chemotherapy/drug-info/carboplatin.aspx After switching to Carboplatin, I can 't say things got better, but they did not get worse so I think most of the damage was done by Cisplatin. Also, protect your ears from loud sounds from now on. I recently had an MRI and although they provided ear plugs a lot of the noise got through. The tinnitus got much worse afterwards and it's still at a higher-level a week later. Wear ear plugs to concerts, loud events outdoors, etc. Good luck! -JayGee
  18. So her oncologist just called her and said that he spoke with his colleagues and now wants to wait on the biopsy until the PET scan was conducted. Not sure if this is a good thing or not. Anyone's thoughts?
  19. Good evening. Thank you for your reply. Her chest CT scan came back today with no concerns as well as her blood work. However, her oncologist did detect an enlarged lymph node in her under arm on her CT scan. He believed that was more suspicious than what we originally thought to be an enlarged lymph node in her collar bone?? So confused. They are going to do a PET Scan and Biopsy next Thursday. I just don't know what to think. I'm exhausted. Be well everyone.
  20. Last week
  21. Hi Bridget! Thank you for sharing your insights - it looks like you've faced a similar decision in the past. Also congrats on your 8 years of NED! Good suggestion on getting the original Tumor Board report. So far, I just got a verbal description from my oncologist, not the written report. The Dana-Farber feedback was a "pseudo-2nd opinion". It came after the local Tumor Board was split in their opinion, and my oncologist sided with the "observation okay" side...but then he ran my case past Dana-Farber to get their feedback. It was more informal as I believe my oncologist forwarded my case to a colleague at Dana-Farber for review, and then they had a phone call afterwards so there is no written report. For a week, I thought I was good to go with just observation, then had my spirits drop when their opinion differed and more chemo was recommended. I went to Yale/Smilo for another opinion to "break the tie" and they gave me a little bit of confusing feedback. During one phone call, they also suggested adding Taxol, but said I could do 2 more doses of the previous chemo treatment (Carbo+Alimta) if I wanted to avoid the Taxol+Carbo combo. Then in subsequent call, they reverted to the Taxol option as the recommendation. Ugh. I had already decided to "split the difference" and do the Carbo+Alimta option which I had already experienced this summer. I'm waiting to hear back for clarification (the actual oncologist didn't call me, it was his support team), but am pretty sure the recommendation will remain as Taxol. Agree that neuropathy is also a concern - I'm already experiencing that in my feet, along with tinnitus which supposedly was caused by Cisplatin. Really wanted to avoid more chemo for a variety of reasons...but also want to avoid a relapse. Wish there was data available. I'm a guy, so the no-hair look is more acceptable and I won't be getting a wig, but appreciate your suggestions. It just delays getting back to normal and hurts my job search. The last 6 months have been life-changing and I just want to put it all behind, but may have more to endure. Thanks again for you insights! -JayGee
  22. Hi Tom, Thanks for your feedback and insights. From your history, I see you have been through a lot. Congrats on your perseverance! Before this diagnosis, I was healthy and active (and a non-smoker). Pre-surgery I went to the gym to prepare for my lobectomy. No issues. I really had no symptoms despite my stage 3B diagnosis. The only evidence of an issue was a very slight wheeze - which I didn't even realize was there (my girlfriend only noticed it in bed in a silent room, sleeping). Barely detectable. Apparently, the tumor had been growing for more than 3 years. An old chest x-ray from 2016 revealed a 2cm growth. The reason it was not detected back then was due to pneumonia which obscured the image. The pneumonia was unrelated to cancer - I was just overworked - and antibiotics solved it back then. Fast forward 3 years, when I had a CT scan to uncover the reason for the "wheeze" and was told they saw a "mysterious mass". I retrieved a copy of the old x-ray and asked if it might be related to the 2016 pneumonia. They said, yes, it was possible the mass was just old scar tissue but ordered a biopsy. The subsequent bronchoscopy revealed a 5.5cm tumor and a positive lymph node. What a shock! And here I am... After reading many stories here, I can see that I'm lucky even though it doesn't feel like it. I just want to get back to "normal" but don't want to ignore the seriousness of this illness. Mentally, I was ready to move on after surgery as I'm feeling about 75-80% of my old self now. When I see my oncologist, I'll ask about the dosage of Taxol...won't get my hopes up but maybe it won't cause hair loss if the adjuvant dose is lower. It's not about vanity - I really kept a positive outlook and powered though chemo, radiation, and surgery by convincing myself I was fine - there was no external evidence of my disease. Attitude can mean everything, and I was in the "F-Cancer" mindset. Looking in the mirror and seeing friends and family, I looked like myself. Maybe even better as I was going to the gym after the diagnosis to strengthen my reserves. Taking Taxol and dealing with more side effects feels like going backwards, so I'm going to need prepare myself mentally. Job-hunting will need to be put on hold too, but what can you do. Thanks again for your encouraging words and advice! -JayGee
  23. Hello fellow survivors and caregivers. I have a difficult decision to make and would appreciate your feedback. Can I avoid more Chemo? Advice appreciated, details below... This summer I was diagnosed with NSCLC lung cancer (Stage 3B), and I've since been through chemo, radiation and successful surgery to remove my upper left lobe. My oncologist initially said he would be okay with just doing observation (CT scans every 3 months) as a next step rather than adjuvant chemo after my surgery. He said the Tumor Board was split on their opinion of doing more chemo vs observation, and I was within "national guidelines" to just observe since I was re-staged to 2A after surgery. I'm 53, never smoked, and am generally fit and healthy. My oncologist then shared my case with Dana-Farber. They recommended adjuvant chemo (2 treatments) with Carboplatin plus a new chemical I did not have before - Taxol - which will have more side effects that what I've experienced (hair loss) and would set me back in my recovery in some ways. I'm not currently employed and aiming to get back in the job market so losing my hair and looking like a cancer patient is not going to help. See below for details on my case: Diagnosis pre-treatment (June 2019): 5.5 cm tumor in my upper left lobe - Adenocarcinoma NSCLC. Growing for at least 3 years prior to my bronchoscopy. Lymph node detected with cancerous cell during bronchoscopy MRIs and PET scans were negative - no spreading outside the lungs Treatment completed (July-August 2019): 3 doses of Chemo total. 2 doses of Cisplatin + Alimta/pemetrexed, and 1 dose of Carboplatin + Alimta/pemetrexed 30 rounds of radiation - 54 Grey Doses total. Aimed at tumor and lymph nodes. Surgery completed Oct 7th: Upper left lobe resection along with removal of all local lymph nodes. VATS technique. Went well. Results: Tumor margins were clear. All lymph nodes negative. Tumor shrank from 5.5 cm to 4.2cm due to treatment. Genetic testing: EGFR Exon 20 mutation found, no others present. Aftercare - Dec 2019: Oncologist says it's "my option" if I want to get more chemo "just in case" it helps a prevent recurrence. However, he can offer NO data on if more chemo will help or not. It's a leap of faith. The reason for switching to Taxol is my tumor only shrank from 5.5 cm to 4.2 cm after chemo/radiation. Also, the tumor was more than 10% alive upon resection. I already have side effects of tinnitus from the Cisplatin (which is why they switched me to Carboplatin for the 3rd cycle), plus neuropathy in my feet. I really don't want to suffer hair loss (which Taxol causes) as I'm looking for a job and don't want to look like a cancer patient while interviewing. I believe 2 treatments of Taxol+Carboplatin would set me back 4-5 months before I get back to "normal". Plus it could increase my existing neuropathy. TLDR: I want to get back to my normal life and avoid additional chemo (especially Taxol) if possible. I also don't want to relapse, but my oncologist says there is no data on the effectiveness of doing more chemo. It's my option. I need to decide soon - it's about 2 months after surgery. What would you do?
  24. So it’s been almost three years since mom was first diagnosed with stage 3a adenosquamous NSCLC. One tumor, two nodes positive at the time. All surgically removed. She had chemo prior to surgery and radiation after. Recently she’s had a terrible cough and the family and I all believed it was just a cold since it’s winter and we have all been sick. She recently mentioned having an enlarged and somewhat painful lymph node near her collar bone. Her oncologist was contacted and said he believed it to be suspicious. She goes for a CT scan tomorrow. She’s very nervous and so am I. Her chest CT scan last month was clear. So very frustrating... She was positive for EGFR last time her tumor was profiled. If this is confirmed to be a recurrence, is it likely that she still has that mutation? Really hoping it’s not, but trying to prepare for the worst. Any feedback would be appreciated. cheers
  25. Hello, I am currently getting Cisplatin with Gemcitabine and have ringing in the ears. I have read online that the Cisplatin can cause permanent hearing loss. The ringing started after the first round and I've completed 2 rounds out of 4. I am thinking of stopping chemo because of this. Has anyone else had this problem? Thanks!
  26. Hello everyone, I was diagnosed with stage 2b nsclc, with no spreading, in July 2019. I had my right lower and middle lobe removed due to a 6.2 cm tumor being wedged between them. Two months after surgery, I started having tachycardia at rest and with exertion, which causes increased shortness of breath and dizziness. My doctor thinks it's my heart trying to compensate for the loss of lung lobes and will stop, but I'm still worried it might last forever. I am also doing four rounds of chemo and just finished my second round. I'm wondering how long will I be this short of breath and has anyone else had the increased heart rate issue after surgery? Thanks for your help!
  27. Earlier
  28. I got my results back from my biopsy today, it shows NSCLC favoring squamous cell carcinoma. Nonsmoker, 50 y/o in good health, so why wouldn't I get something more identified with smokers... It doesn't look like anything is in the left lung or lymph nodes, so that's good. Question; does this type of cancer generally spread to the opposite lung and lymph nodes before it would metastasize elsewhere, or is it completely random? I'm curious as to some of the other information in the report, I see the radiation oncologist on the 3rd, and I will ask him a ton of questions, but if anyone can share any insight to these areas underlined below, it would be much appreciated! Specimens: A - Lymph Node, Other, 4R. Lesion Size and Description: 1.99cm B - Lymph Node, Other, 11R Lesion Size and Description: 1.91cm C - Other Source, Lung, right mass. Lesion Size and Description: 10.0cm Diagnosis: A. Lymph node, 4R, EBUS-guided transbronchial needle aspiration, cytology with cell block: -Non-small cell carcinoma, favor squamous cell carcinoma (see comment) B. Lymph node, 11R, EBUS-guided transbronchial needle aspiration, cytology with cell block: -Non-small cell carcinoma, favor squamous cell carcinoma (see comment) C. Right lung mass, EBUS-guided transbronchial needle aspiration, cell block only: -Non-small cell carcinoma, favor squamous cell carcinoma (see comment) Interpretation/Comment: The aspirate smears show relatively abundant fragments of nonsmall cell carcinoma. Morphologic features are compatible with squamous cell carcinoma, and probable intercellular bridges are seen, although no keratin pearls or cytoplasmic keratinization (as evidenced by cytoplasmic orangeophilia) is seen. No small cell component is seen. Immunohistochemical stains performed on C1 show the following results in the tumor cells: p40: Positive TTF-1: Negative This immunohistochemical staining profile supports the morphologic impression of squamous cell carcinoma. Cell blocks A1 and C1 contain very scant tumor. Cell block B1 contains almost no tumor. (this seems like good news, but since they reference tumor and not cancer, I am not sure)
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