[Continue chemo?]

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

[Hi everyone.]

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 

[Where are your NSCLC met locations?]

what tissue is involved?  lymph nodes?

 

[Breast cancer survivor w/8 mm upper nodule seeking info after 2 CT scans]

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

 

[Elderly mom with RA just diagnosed with stage 4 NSLC]

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

 

[Malignant pleural effusion?]

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

[Low point]

i am not wise but can offer my early experience on passing out.

my first visit with my oncologist, he sent me to a local lab for blood tests.  i went directly to the lab and had 2 vials drawn.  no big deal.

the drive home was short and took me past the oncology clinic.  while at a stop light i began to feel odd.  i decided to cross the intersection and then stop at the clinic.  i recall the light turned green but woke up after hitting a light pole.  ambulance came and took me to the er.  they had started an iv in the ambulance.  that seemed to be the problem.  dehydration.

broke my wrist in the accident and needed surgery.  the oncologist, ortho and general surgeon asked if i wanted to delay chemo after surgery.  i said no and they agreed.  general surgeon put in my port and ortho took over and did my wrist at the same time.  all were interested in the healing process, which was slowed but it did heal.

for decades i rarely drank water.  i swilled about 6 liters of tab (then diet coke when tab was discontinued) daily.  when i woke in the wrecked car, i poured out the diet coke in the cupholder and now only drink water.  i have not had a problem passing out since.

might not be the answer to your problem but hydration is important.

might keep a check on your blood pressure too.

i understand what you are saying about talking to others.  i get my chemo in a setting with others in the same room.  what you can say to someone in the same boat is different than what is possible with others.  and what they can say to you.  don't feel bad about posting here.  we probably have the same thoughts.

 

[Recurrence]

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

 

[CT scan results]

On 10/31/2023 at 6:24 PM, Chuck K said:

Bridget

Thank you looking forward to relaxing ,umbrella drinks and authentic tacos

be careful what you wish for in authentic foods

our family was eating authentic mexican tamales - my sister opened one and there was a chicken foot in it - the lady that made them explained it was good luck - and yes, they eat the foot

trying not to be judgmental but...

my mom has eaten haggis in scotland and horse in paris - but i did not see her reach for the chicken foot

happy travels and try to avoid any plane brawls 

 

[Carboplatin and Altima]

everyone is different but here are my experiences

stage 4 diagnosed over a year ago - my cea blood test was 55.8 - pet scan showed a spot of activity in a lower spine vertebra - lymph nodes in my chest (extensive) and 1 spot on each lung (the exterior, possibly scars)

my oncologist said 'this is not the cancer caused by smoking' but has never said mesothelioma

symptoms were trouble breathing and my left vocal chord nerve was pinched by the lymph nodes (paralyzed my left vocal cord) - discomfort in my chest - lost 60 pounds - biopsy of lymph node confirmed diagnosis and showed me eligible for keytruda

started on this

b12 shot once a month

folic acid (one of the b vitamins - rx) morning and night (1mg)

the 3 week cycle i was put on

keytruda infusion

carboplatin and alimta infusion (at the same time)

udencya shot the day after carboplatin/alimta - this is a neulasta generic - it boosts white blood cells

zometa infusion (i think this is the old ladies bone restorer stuff)

the day before, day of and day after the carboplatin/alimta - dexamethason 4 mg - 2 in the morning and 2 at night - steroids

the results for me - last 3 pet scans show no activity - my oncologist used the remission word - regained those 60 pounds - cea level is normal now - vocal cord paralysis is gone

he removed the carboplatin a few months ago but i still take the alimta - stopped the udencya too 

i have a life port

side effects

carboplatin - taste - stuff tastes like a yeti cup - but 2 things - i still remember how good greasy, salty food tasted so i still eat it, though with a little disappointment - second thing is peanut butter and CHOCOLATE still tastes like peanut butter and CHOCOLATE!  the cancer card gives you permission to eat crap and no one scolds you for it - taste begins to return when you stop carboplatin

alimta - i suspect this is the constipation demon - like you, nothing i can't LIVE with

udencya - makes you feel a little 'yucky- for about 2 days - nothing that kept me from functioning

steroids - trouble sleeping while i take them those 3 days so i do crossword puzzles in bed and channel surf on the tv all night (i have seen EVERY episode of 'my 600 pound life' and feel a personal connection with dr now)

keytruda - none that i can identify

fatigue - nothing i can't deal with and i suspect my lack of motivation contributes (my lardass nature i suppose)

the loss of feeling on fingertips - that thing - not very noticeable but there is some - fingertips might wrinkle a little 

i have bloodwork twice in the 3 week cycle - cbc and cmp - one time in the cycle they do a cea too - my blood has been remarkably normal through all of this

that is it - no hair loss - not one day of nausea 

keep a good attitude about the treatments - i am reluctant to say cake walk but i am shocked how little effect carboplatin and alimta has had on the way i feel 

not everyone has it that good - as i understand it, CISplatin is much harder than CARBOplatin - and others are on much harsher chemos than what we are taking

i don't know what put me in remission (the chemo or keytruda) and never will know - but neither had a huge impact on daily functions

we all fear cancer - no one can tell you not to - but i can confidently tell you NOT to fear carboplatin and alimta 

not many on here have our treatment plan - but it has been effective and scarily easy for me - praying it is for you too

(my chemo nurse - has a good sense of humor because i call her nurse constipation - interrupts my joy of  regular bowel function every 3 weeks for awhile - it won't last 3 weeks - doctor said miralax every day might help (ugh) or a stool softener - he also said milk of magnesia was ok - i usually hit that at 60 ml once to get back on track - seems petty compared to what others have to deal with)

again - fear cancer - not the treatment - you got this

[How active are you in the real world these days?]

polio was never eradicated from the planet - but it is making a comeback - with drug resistant tb - and others

my guess is that our borders open to anyone - that are never tested - from countries where drugs are not restricted to prescription - contribute more than my extreme individualism

 

[How active are you in the real world these days?]

i have changed very little because of covid - i do watch my blood tests and they have remained remarkably normal - i was getting a neulasta type shot when i was on carboplatin but that was dropped when the oncologist dropped the carboplatin

i did take 3 covid vaccines only because i was caring for my 96 year old mother - i did test positive once but since i has no symptoms, i suspect the test was wrong (free government home test)

i have by doubts about the covid info we are fed - the vax did NOT prevent covid - our hospitals were incentivized to classify deaths with covid as death caused by covid (as well as the survivors getting money for funeral costs) -  vaers reporting was discouraged (if not forbidden by some hospitals) - i am not saying covid is not serious - i am saying we don't know how serious it is

if you think that sounds wacky - my journey into cancer closely resembles this

https://www.theatlantic.com/science/archive/2022/09/mrna-covid-vaccine-booster-lymphoma-cancer/671308/

with dissenting medical opinions censored on a rushed first ever mrna vax, i suspect we will learn of lots of problems caused by these vaccines

as far as karens forcing me to change for their safety:

“Those who would give up essential Liberty, to purchase a little temporary Safety, deserve neither Liberty nor Safety” - Benjamin Franklin

[Diagnosis]

oh - and blood work every 10-12 days

always a cbc - usually a cmp - about every other tine a cea

you can get all your reports online and read them yourself - they have your reading for each catagory of the tests and show the normal range - not too mysterious

i like the cea - i call it the cancer test for dummies - a cancer test (though there is more to it than that, im sure) normal is 0-something - for smokers its 2-4 (or something like that - i started at 55.8 and now back to normal range

i like this site for an explanation

cbc

https://labs.selfdecode.com/blog/cbc-blood-test/

cmp

https://labs.selfdecode.com/blog/comprehensive-metabolic-panel-cmp/

 

[Diagnosis]

i had the same chemo - carboplatin and pemetrexed (alimta) mixed one day - pembrolizumab (keytruda which is immunotherapy) the next day - 3 week cycle

third day i had a neulasta type shot to boost white blood cells

i did that for about 8 months until remission (i was stage 4) - after 2 negative pet scans, he dropped the carboplatin and neulasta

i do take folic acid pills daily, b12 shot monthly

on chemo day i take steriods the day before, day of and day after (the carbo and alimta day)

when you get infused, they mix other stuff in the bag - like steroids or Benadryl or nausea meds - sometimes a separate bag

i have tolerated it well - no nausea or hair loss - blood work was normal and it has me in remission - my biopsy (lymph node) showed the cancer is genetic rather than smoking - my guess is it is either mesothelioma or something akin to it - so yes, there is a difference

i hope the regimen is as easy on you as it has been for me - and it works for you too 

[LisaSH]

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)

 

[chemo cost]

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?

 

[GP Suspects Lung Cancer (Non Smoker)]

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)

 

[Caring for my 59 y/o mom, 1 year post-lobectomy]

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 first ever surgery!!]

surgery is nothing to fear - the anesthesia is so much better now - its literally like a light switch - out - awake - no nausea

do not be apprehensive - don't get any infections

living without a/c is scarier 

cancer is scary - surgery isn't 

 

 

[Help in making a decision to treat or not]

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 

 

[Caring for my 59 y/o mom, 1 year post-lobectomy]

On 6/22/2023 at 10:01 AM, wendybird said:

...and am so scared that she won't have a chance to know my future kids and be around for more milestones.

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