15-3: Just had labs drawn today!! 15-... - SHARE Metastatic ...

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15-3

MMMP profile image
MMMP
18 Replies

Just had labs drawn today!! 15-3 up again - was 422 4 weeks ago now 502.7 see my doctor on Thursday- wtf - getting tired of all this - roller coaster ride!!

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MMMP profile image
MMMP
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18 Replies
nstonerocks profile image
nstonerocks

It does get exhausting. Some days I feel like I just don’t have the psychic energy to deal with all the uncertainty and setbacks. That’s when I Try to pause and take a deep breathe and let go as best I can. Meditation is very helpful. It helps me hit reset. Sometimes I have a private pity party. Tears can be cathartic. My doctor doesn’t focus on tumor markers tho I know she draws them. I focus on scan results. It is very hard but we do get thru it. I am starting to call this Stage WTF, cause it sure is. Here’s a hug and good intentions to help you deal with the numbers and move forward. 🙏

Barbteeth profile image
Barbteeth

Hi there

I’m having the same scenario with my markers..they’ve increased now for four months

After the second increase my scan was moved forward a month because I was so depressed about it but it showed stable mets and a pleural effusion has resolved

I’m having another scan in two months again and the usual monthly blood tests

The whole way of trying to live with this disease and it’s accompanying emotions can be very upsetting

My oncologist said she will keep me on Ibrance/letrazole unless markers suddenly double or the next scan shows progression and then she would consult with a colleague and probably change my treatment

I know exactly how you feel..I’ve had to see a therapist (reluctantly) to try and get me out of this low mood..I’m still crying but not every day

I struggle with the uncertainty most of all and the feeling of having no control over my health..I can’t do anything to make myself better just swallow the blasted drugs and worry from one scan to the next

All the best with your next appointment and from what I’ve read on this board..markers are not always an indication that there’s anything wrong so hopefully they’ll go down again

Barb xx

Moon-and-Stars profile image
Moon-and-Stars

My oncologist has said from Day 1 not to rely on markers. They are not a reliable indication of progression. But there’s no point in me saying “don’t worry”, because I’d be up in a heap myself. Roll on Thursday x

kit5 profile image
kit5

wft is right. honestly. it is like we drew the shortest straw ever. i am so sorry - but sometimes markers go up and it isn't anything to worry about... i just started my 4th line of treatment...and it is carboplatin plus immunotherapy and i was in bed for a full day and a half. truly - in bed. i am so distraught...but trying to focus on the 2+ weeks that i will be "normal". hang in there and just try to distract yourself with non cancer thoughts...easier said than done... xo

MMMP profile image
MMMP in reply tokit5

Thanks for the reply- I’ve only been on Xeloda and xgeva- so maybe it’s time to try another weapon of destruction! 🌪

kit5 profile image
kit5 in reply toMMMP

i just left xeloda...i liked it a lot but don't miss my hands and feet issues:) i guess no matter what, there are side effects... i do xgeva on occasion... my bone mets are lazy and inactive, so i figure why not wait until they start acting up:) have a great wednesday...i will power through the day. thinking of my fellow warriors!

MMMP profile image
MMMP in reply tokit5

Wondering what you are taking now you left Xeloda!!!

kit5 profile image
kit5 in reply toMMMP

i am taking carboplatin plus immunotherapy. i have a palb2 mutation and my cancer is very weird with a high mutational burden... more like "scatterings" than measurable masses...so i am a good candidate for keytruda. (famous last words, right?!) the carbo was fine days 1, 2, 3. then i crashed and burned days 4,5, and 6...almost normal today but now the poop started. lol. it's always something! but my doctor vetted this trial with a few other oncs, and they all said this is my best option:) i will keep you posted bkz this forum is the only place where people besides my immediate family know i have the big c.

Terilyn12 profile image
Terilyn12

I’m going thru same with my 27-29.. jumped 135 pts this month!! I know, my dr says we worry about: 1. How you feel 2. Scan results 3. Finally tumor markers. But still... seems impossible not to get a little freaked out when they rise!! I just want to get to the 100s level - I am stuck in the high 400s for the past few months.

MMMP profile image
MMMP in reply toTerilyn12

Maybe the 400 will be your normal- I’ve been in the 200s for about 2 years with the 15-3. 3 years ago my 27-29 was in the 2000’s- it went down as soon as I started the Xeloda- switched to the 15-3 cause the results were ready same day. Agree with hands and feet - if I have to switch my feet and hands will have a party- I have every tube, container, jar or pump or creams and lotions!!! It’s hilarious!!!

Kimr2081 profile image
Kimr2081 in reply toMMMP

I have been on Xeloda for about 5-6 months now. It took a while to get the hands and feet symptoms but i finally did. My doctor lowered the dosage by 500 mg and it has helped. I also got a rash on my forearms. He gave me a steroid cream for that but i hated using that so I mixed some fractionated coconut oil with a few drops of Frankincense essential oil and I swear it has helped. Just in case you get a rash. I hate sleeping in socks but every night I put something on my feet to keep them from cracking and peeling - aquaphor has worked the best for me. My hands aren't really bad at all. They just feel like the skin on my palms has shrunk and I have to stretch my fingers to make them feel normal. I still wear my regular shoes and workout 3 times a week so it's not limiting me. And yes WTF - if it isn't bad enough we have to deal with this crap!! At least I haven't lost my hair. Was glad that wasn't a side effect. Onward and upward!!! As my family says "Fight On" - that is a phrase associated with the USC Trojans where my family has season tickets!! They think it applies to me and I guess it does.

MMMP profile image
MMMP in reply toKimr2081

What a great reply!!! I love the way you explained about how your fingers feel! I’ve been on it for almost 3 years- 1500 twice a day- 7 days on 7 off. My feet are bigger so I got to get all new shoes- boots and sandals!!! Still get manicures and pedicures !!! Find JOY everyday!!!! Retail therapy also helps-

Kimr2081 profile image
Kimr2081 in reply toMMMP

Glad to hear that it has worked that long for you. I will keep my shrunken fingers crossed - haha. I still get pedicures too and yes retail therapy is the best. My husband says he is on a first name basis with all the Amazon delivery guys. I meet my girlfriend for dinner and shopping at least once a month!!

PLASEM profile image
PLASEM

Yes I am anxious too with lab work and scans

NCDS profile image
NCDS

Mine just went from 186 down to 125, now up to 225! Petscan and I guess new treatment. Crazy. Prayers, wish we had answers!

MMMP profile image
MMMP in reply toNCDS

I’m set for a bone scan and CT in 2 weeks- he said he would love to get another biopsy from somewhere to recheck pathology- one day at a time is all we can do!!

MMMP profile image
MMMP

I feel very blessed to have good insurance and a great hospital with a cutting edge cancer center- keeper Movin!

NCDS profile image
NCDS

My markers jumped up a hundred points. Petscan showed improvement. My Dr said test could show cancer brewing and not yet detectable. Switching from Ibrance, faslodex to oral chemo and radiation for bone mets in neck. Total roller coaster! Happy scan shows improvement, angry bone mets worse and numbers high, nervous about New treatment! The new normal, truly one day at a time! Praye rs!

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