tgif i guess

carboplatin, alimta and keytruda about 8 months in, remission so carboplatin was discontinued - still on alimta and keytruda while on carboplatin, i had a udenca shot the day after carboplatin my bloodwork remained remarkably normal until the last few months - but now my red blood cells are low i think udenca is a neulasta generic - but there are treatments to get your bloodwork back in line (i think udenca is for white blood cells) if you are otherwise tolerating chemo, i'd stay the course

i was diagnosed stage iv about 18 months ago - lungs, lymph nodes and spine i've had no radiation chemo is carboplatin and alimta imuno is keytruda after 6-8 months pet scans began to come back clear - carboplatin was discontinued what amazed me was the treatments had few side effects - never had nausea - did not lose hair - no pain if they opt for chemo, it might not be as bad as you think - and hopefully, effective

what tissue is involved? lymph nodes?

i love pet scans i had a ct scan - it had a note from the radiologist that recommended a pet scan - my gp did not order the test - when i kept getting worse, my gp reluctantly granted my request to see an ent - he ordered the pet scan i think the reluctance is the cost and if your insurance will cover it (without a cancer diagnosis) - my insurer did approve it and the images showed all the lymph nodes in my chest were involved a ct has its place and you can look at the images and understand them - a pet scan makes no sense unless you know how to set all the contrast settings in the pacs system - then you see the cancer in color - amazing technology (and the test itself is easier than mris) they test your glucose level, shoot you up with a mildly radioactive glucose solution, recline you with a warm blanket for about a half hour - then put you on the scanner with a wonderful pillow under your knees - 20 minutes later you are done my second favorite (and underrated test) is the cea blood test radiologists prefer that tests are performed on the same scanner interestingly (for a nerd like me), a pet scaner can do ct scans also

i have no experience with tagrisso so i can't speak to that - but i sense some hesitation about chemo i take keytruda on the immuno side - on the chemo side i was taking carboplatin and alimta (now off the carboplatin) i have had remarkably few side effects and none of them so bad i could not tolerate them - no nausea or hair loss (the two everyone thinks about first) some chemo drugs are worse than others and we are all different - all the disclaimers my last few pet scans show no disease - was it the chemo? i don't know - but i tolerate the chemo well try not to assume the worst if your mom's treatment takes the chemo route

i had lost 60 pounds before my diagnosis - after a year i have gained it all back we sound alike - we are grease and salt people. i could pass on the sweet stuff the chemo changed that - i still recall how good a hamburger tasted - the reality of eating one is a disappointment - tasted more like my yeti cup then i discovered peanut butter and chocolate - still tasted like peanut butter and chocolate those that love you will crawl over broken glass to get you something you enjoy, so my sisters buried me under reese's peanut butter cups and peanut butter m&ms - i keep them beside my bed and eat them on sleepless nights i also drink an ensure (original) twice a day - calorie dense and i like the thicker consistency - hoping the vitamins might help too i look for foods that might not taste exactly as they once tasted - but are not offensive - and eat them even though its not the same as i remember them

the majority of my cancer was in my lymph nodes - throughout my chest impacted my breathing, caused discomfort and pinched the nerve to my left vocal cord this was my first pet scan Extensive mediastinal and left hilar lymphadenopathy is redemonstrated. The adenopathy is FDG avid. In the superior mediastinum the nodes measure up to 5.9 SUV. Right paratracheal nodes measure up to 8.5 SUV. At the aorto pulmonary window than lymph nodes measure up to 6.3 SUV. At the left hilum maximum SUV of 6.1 is recorded and in the subcarinal nodes maximum 7.9 SUV is demonstrated. Left subpectoral and left axillary lymphadenopathy is also demonstrated and is FDG avid. The largest node at the left axilla measures 2.1 cm with maximum 7.4 SUV. The tiny 1 cm spicular focus in the left upper lobe demonstrates intermediate FDG activity with maximum 2.2 SUV. At the L4 body there is a focal area of intense activity in the right pedicle measuring 7.1 SUV suspicious for metastatic lesion. interpreted means something like '2 spots on the lungs, a spot on my spine and a buttload in my chest lymph nodes' my last pet scan No focal area of abnormal FDG accumulation is identified at the neck, chest, abdomen, or pelvis. There is no evidence of recurrent or metastatic neoplasm. Lucent and sclerotic bony lesions at L4 and the right ischium demonstrate a stable CT appearance with no FDG activity currently. sounds promising - and this was at the bottom IMPRESSION: Negative PET-CT exam. so yeah - they can fight it in lymph nodes - this is how they fought mine chemo - carboplatin and alimta immuno - keytruda every 3 weeks - for about a year (saw results before a year though) - stopped the carboplatin a few months back kept my hair - not one day of nausea - my voice came back some side effects but nothing i could not live with not everyone reacts to chemo the same - i know that - and what i take might be on the mild side we all fear the cancer but i would not let the news of a possible lymph node involvement add to the fear

welcome i did not have taxol but from my reading its a rough go for most- i also had no radiation i DID have carboplatin (mixed with alimta) - carboplatin has been a nothingburger for me on side effects - taste changed so all the foods i loved tasted like metal but it took awhile for it to develop and return after discontinuing (took carboplatin every 3 weeks for like 8 months) - took a white blood cell booster while on carboplatin but it kept my bloodwork (cbc, cmp, cea) in the normal ranges i still take keytruda every 3 weeks and have no side effects that i can notice - as far as i know, that will be the rest of my life or until it attacks my body i still take alimta every 3 weeks but that is not for your type of cancer last 2 pet scans were completely clear - having another friday - i am stage 4 lung (similar to mesothelioma) - it had a small hit on a lower spine but the real fireworks show were the lymph nodes in my chest - big time hits i don't know if it was the carbo or keyturda that put me in remission but i tolerated both of them very well - i take steroids the day before, day of and day after the carbo/alimta infusion that keep me awake and eating everything in the house - and constipation is no party - but zero nausea and i still have hair when you get to carbo and immunotherapy i bet you will feel much better - and - when recalling how good that pizza was before carbo, you can still eat the pizza (that now tastes like they put grated steel on it instead of cheese) because it won't make you nauseous - bonus tip - peanut butter still tastes like peanut butter - even better - CHOCOLATE STILL TASTES LIKE CHOCOLATE (and your sisters will bury you in reeses peanut butter cups and peanut butter m&ms (to be fair, i am on a ton of old blue haired ladies prayer lists - best ones to be on because they are too old to sin and have a lot of pull upstairs)

please remove if threads like this are not allowed my question is about the cost of alimta. my oncologist said my private insurer will not cover the cost of the drug. it was covered for months but the reimbursement rate changed. as i understand it, private insurance cannot pay less than medicare but are allowed to pay more. there seems to be a 'bio similar' drug, pemfexy. looking at the coding for alimta, the average sales price: ASP Drug pricing - J9305 Jul 1, 2023 - Sep 30, 2023 10 MG 7.933 April 1, 2023 - June 30, 2023 10 MG 17.141 January 1, 2023 - March 31, 2023 10 MG 27.681 October 1, 2022 - December 31, 2022 10 MG 47.747 Jul 1, 2022 - Sep 30, 2022 10 MG 78.393 from july of 2022 to july of 2023 the reimbursement for medicare dropped. which means private insurers can drop theirs. pemfexy is currently at 64.476 after a delay in treatment, the office manager found a source for alimta but not sure how long they will offer it at that price evidently it is illegal for me to pay the difference in price - but i assume i can pay the full price anyone else having problems getting alimta?

my voice was impacted by my cancer - hoarse and raspy - it got to the point where it was difficult to finish a sentence (out of breath) that is what finally prompted the testing that led to my diagnosis and it was an ent that ordered my first pet scan this is how he explained it to me the nerve that controls the left vocal cord travels from the brain down past an area near your heart and lungs - the right vocal cord takes a different path the lymph nodes in that area were swollen and had lung cancer - i had chest discomfort too - the lymph nodes had pinched (and thus paralyzed) my left vocal cord, causing the loss of breath (it no longer moved so air rushed out when trying to talk) i had chemo and my last 2 pet scans were negative - my voice improved but it still not exactly normal yet (but the breathlessness is gone)

i am taking chemo and immunotherapy so i have blood work twice every 3 weeks - the cea test is just another vial of blood and cheap - at diagnosis, my cea level was 55.8 but is now back to normal levels - its a way for the oncologist to monitor the effectiveness of my treatment i have a pet scan every few months but its obviously more invasive and expensive i can watch my cea levels myself - i cannot tell much from looking at my pet scans so i rely on the test report for that

my experirnce carboplatin/alimta day 1 keytruda day 2 neulasta type shot day 3 repeat every 3 weeks no hair loss - no nausea - stuff tasted like metal but - the last 2 pet scans were clear so we dropped the carboplatin not sure what helped me but keytruda is nothing to fear

i cannot come up with anything better than that. nothing excites a mother more than the prospect of her grandchildren. so get busy. (sorry - had to say that) the good news is monoclonal antibodies are there if she needs them - not sure why they would not give it to her anyway because i have had no problems with keytruda - the better news is that they are getting better every day (my chemo nurse said if we find the cure, it will be monoclonal antibodies) i'd find a doctor that would run a cea every month or so - easy and cheap it won't stop you from feeling guilty, but your Mom does not want her children feeling guilt because of her - try your best to honor that