update March 9th results of Feb 28th scan...see below.
Re-posting the status of my cancer... ... I have Adenocarcinoma Non small cell lung cancer stage 4.. PDL-1 less than 1% with no mutations... I was diagnosed in December of 2018 but did not begin treatments until late February 2019 by the time they finalized my PET scan, sending my biopsy to Toronto to see if I qualified for immunotherapy etc... my oncologist said that the information came back from Toronto that I did not qualify for immunotherapy so they began my therapy with two different chemo drugs... CARBOplatin and Premetrexed (aka:Altima) I was given the combo of the two chemo drugs for 4 infusions every 3 weeks... then just premetrexed for the next 7 infusions every 3 weeks.. I was told by my oncologist that in Oct 2019 that the chemo drugs were no longer shrinking my tumours.. so They began giving me infusions of Nivolumab (aka: Opdivo) every 4 weeks, my last infusion to date was on Feb 13th, 5 infusions so far... I will not know if the immunotherapy is working until I have my next scheduled CAT scan this Friday, Feb 28th.. will get the results from my oncologist on March 9th. I am praying for a miracle to hear NED... I know this drug has done wonders for many people... The only thing that confuses me at this point is why I was told I did not qualify for the drug when I was first diagnosed and now they are giving me the drug... so who knows.. I will be asking my new oncologist on my March 9th appointment that question and will let you know the outcome either way... Please feel free to share your journey in hopes that other people will learn from it or find out there is hope ... and never accept the diagnosis of there is nothing more we can do for you... ALWAYS SEEK A SECOND OPINION and never give up hope...
OKay.. .here are the results of my scan after 5 infusions of Novolumab (Opdivo) from Feb 28, 2020 scan... guess its kind of stable.. 2 steps forward and one step back...The tiny nodules identified within the right lower lobe the lung have almost completely resolved tiny nodules noted within the right lower lobe the lung measuring 2 mm. The subsegmental atelectatic changes with some degree of speculation identified involving the right lower lobe the lung have also significantly improved, on the prior examination speculated area measured 1.2 x 0.6 cm in size the current examination measures 1.2 x 0.4 cm in size less nodules are noted in this location. Multiple nodules noted involving the left upper lobe the lung have also resolved. Of note however, there is a larger mass identified involving the left lower lobe the lung measuring 1.4 x 1.5 cm in size, on the prior examination measuring 0.8 x 1.2 cm in size is also a new nodule identified involving the lower aspect of the left upper lobe the lung measuring 0.5 cm x 0.5 cm in size.
@janlanderz- Good morning Jan. Some of this is terribly encouraging. I know that when medicine doesn't do what you hope it will that it is terribly discouraging and frustrating and scary. I too have several lesions that have grown and lots of tiny ground-glass nodules.
What does your new oncologist say about what the next step will be for you? Do you like him and have confidence in him?
Welcome! I’m living with stage 4 lung cancer which nodules had spread to liver and stomach. Did chemo treatments (Carbopltin, Pemetrexed , pembrolieumab) for 7 or 8 months. Tough road so went on Keytruda and have stayed the same since except do not get sick. Have blow out for a day and half and than feel good till next treatment. (Every 21 days). So far so good.
Welcome! I’m living with stage 4 lung cancer which nodules had spread to liver and stomach. Did chemo treatments (Carbopltin, Pemetrexed , pembrolieumab) for 7 or 8 months. Tough road so went on Keytruda and have stayed the same since except do not get sick. Have blow out for a day and half and than feel good till next treatment. (Every 21 days). So far so good.
It started with continuous coughing. Ct scan showed fluid areoun heart. Pericardial Window was done and fluid was drained. Few wks later thoracenthesis was done. 3wks later another one was done in office. I have this continuous coughing that is keeping me up at night. I'm miserable and dont know what to do. Don't have any appetite. Trying to force feed.
@janlanderz- Good morning Jan. Some of this is terribly encouraging. I know that when medicine doesn't do what you hope it will that it is terribly discouraging and frustrating and scary. I too have several lesions that have grown and lots of tiny ground-glass nodules.
What does your new oncologist say about what the next step will be for you? Do you like him and have confidence in him?
My oncologist says I will be continuing with the Nivolumab (Opdivo) every 4 weeks .. next infusion is tomorrow and he will decide with the end of May CAT scan what the next step will be.. he thinks may have to have radiation or what he termed as Bad Chemo if the new growing tumor should not behave I guess... .. not sure what he meant by Bad Chemo... eeeccckkk... I have only seen this oncologist twice.. Monday was my second time seeing him.. I am not sure what I think of this oncologist yet... really liked him my first appointment.. seemed real optimistic.. and did not show me the same optimism Monday... I had a list of questions for him that I had typed out...and I think he did not take likely to them.. he made me a whole new appointment with him on March 26th to answer the questions.. one of the questions was asking about my cancer which is PDL-1 less than 1 %... wanted to understand it more... he says I am looking too far into my cancer that the question I am asking is something only a scientist or researcher needs to know... attaching the questions just so you can see the type of questions I asked.. some he answered... like the wine question... lol. but the more complicated ones.. he did not answer...
Hi: Have you heard about GO2Foundation? There is an amazing group of lung cancer patients, survivors and advocates with helpful information and support all dedicated to lung cancer. All the best from a 12 year lung cancer survivor.
thank you Linda.. yes I have heard of the GO2 foundation and sometimes watch the living room... I am from Windsor Ontario Canada... and I am sooo glad to hear you are a 12 year survivor... Stage 4 lung cancer?
It started with continuous coughing. Ct scan showed fluid areoun heart. Pericardial Window was done and fluid was drained. Few wks later thoracenthesis was done. 3wks later another one was done in office. I have this continuous coughing that is keeping me up at night. I'm miserable and dont know what to do. Don't have any appetite. Trying to force feed.
@nursed2075- Have you asked your doctor about your continuous cough and if there was anything that can be done? One symptom of lung cancer is coughing and of course a heart condition too.
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@janlanderz- Good morning Jan. Some of this is terribly encouraging. I know that when medicine doesn't do what you hope it will that it is terribly discouraging and frustrating and scary. I too have several lesions that have grown and lots of tiny ground-glass nodules.
What does your new oncologist say about what the next step will be for you? Do you like him and have confidence in him?
@richcolleen- Hi! What do you mean by a blow-out? How do you feel with this scedule? What are your side effects?
Did you have any fluids in lungs or around heart? Or continuous coughing?
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1 ReactionStool blow outs. Usually last a day and half.
Yes drained almost a quart in lung lining.
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1 ReactionHow often is that happening?
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2 ReactionsIt started with continuous coughing. Ct scan showed fluid areoun heart. Pericardial Window was done and fluid was drained. Few wks later thoracenthesis was done. 3wks later another one was done in office. I have this continuous coughing that is keeping me up at night. I'm miserable and dont know what to do. Don't have any appetite. Trying to force feed.
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1 ReactionMy oncologist says I will be continuing with the Nivolumab (Opdivo) every 4 weeks .. next infusion is tomorrow and he will decide with the end of May CAT scan what the next step will be.. he thinks may have to have radiation or what he termed as Bad Chemo if the new growing tumor should not behave I guess... .. not sure what he meant by Bad Chemo... eeeccckkk... I have only seen this oncologist twice.. Monday was my second time seeing him.. I am not sure what I think of this oncologist yet... really liked him my first appointment.. seemed real optimistic.. and did not show me the same optimism Monday... I had a list of questions for him that I had typed out...and I think he did not take likely to them.. he made me a whole new appointment with him on March 26th to answer the questions.. one of the questions was asking about my cancer which is PDL-1 less than 1 %... wanted to understand it more... he says I am looking too far into my cancer that the question I am asking is something only a scientist or researcher needs to know... attaching the questions just so you can see the type of questions I asked.. some he answered... like the wine question... lol. but the more complicated ones.. he did not answer...
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1 Reactionthank you Linda.. yes I have heard of the GO2 foundation and sometimes watch the living room... I am from Windsor Ontario Canada... and I am sooo glad to hear you are a 12 year survivor... Stage 4 lung cancer?
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1 Reaction@nursed2075- Have you asked your doctor about your continuous cough and if there was anything that can be done? One symptom of lung cancer is coughing and of course a heart condition too.