CA27-29

[CatLady2022]

Before starting meds (Verzenio/letrizole) my tumor marker test was at 301. After a couple months, it was down to 150. Then 115. Then 93.2 and finally this week, 85.7. My concern is the drop in numbers have decreased dramatically and this last month only down by 7.5 points. I’m worried because I was expecting more of a drop. Anyone experience a slow drop in points from one month to the next. Was this a sign of what was to come later? A worsening of their MBC?

[LibraryGeek]

Having so much of a drop sounds good to me! I would have thought the rate of drop would naturally slow down and maybe stabilise rather than continue to drop dramatically- but I am in the UK so never get told anything about markers. Other ladies hear will have more experience.

Jackie x

[Bettybuckets]

So try to relax and enjoy this time while it appears to be working well for you. Plenty of time in the future to worry. Just try to relax and enjoy this time.

[Kiss_my_grits]

my drops were also inconsistent. And now that I’m in “normal” range—but also not yet NEAD— they even bounce up and down a few points. And my scans continue to show progress. Hope the same for you!!

[CatLady2022 in reply to Kiss_my_grits]

Normal range sounds so far away and I didn’t realize it was even possible. I’m so happy for you and hope the same for me. Thanks for the reply.

[KMBL_]

Mine stayed pretty high while on Ibrance and Letrozole for two years. When I went on Xeloda and fulvestrant, they’ve come down 200 points and stopped. They are hovering between 105 and 130. Mine will never go back to normal, as I’m still covered from skull to femurs in bone and bone marrow, but it’s in my stomach as well, and I’m now able to eat and have put some weight back on. As long as they stable in that area and I feel okay, I’m good with that. They were at 490 when I was first diagnosed.

[CatLady2022 in reply to KMBL_]

wow and I thought mine was high at 301. I am also covered from head to toe but only in bone, worse in my pelvis. Onc’s first response to me after seeing my first scans was she didn’t understand how I was still walking. I’m so glad you feel okay. I am dealing with minor stomach issues which has affected my day to day life but other than those issues, I’m pretty much okay, too.

[KMBL_ in reply to CatLady2022]

Do you have lobular or ductal? Have you had an endoscopy, or are the tummy troubles from the meds? I’m glad you’re doing okay too. I asked a radiologist how I’m still here, and he said he had no idea.

[CatLady2022 in reply to KMBL_]

I had ductal in 2014. My tummy troubles are from the meds. I am either constipated or have diarrhea and I have to plan my day based on what I will eat that day. I’m Scared to eat if I have to leave the house. My onc is trying to work on that because she says her job is to make my life enjoyable, tolerable, and as normal as possible but so far, the only thing she has come up with is for me to take a diarrhea med before I leave even if I don’t currently have diarrhea but like I told her, wouldn’t that make me constipated and of course, she had to agree so we’re at a standstill on that front. Hopefully we can find a solution soon.

[KMBL_ in reply to CatLady2022]

So sorry you’re struggling with that. I hope you can find a solution. Don’t have diarrhea but constipation is a whole other story. I take Miralax every other day, and it tends to help me.

[TammyCross in reply to CatLady2022]

I bounced between diarrhea from meds and constipation from the meds for the diarrhea. I cut the dose of the anti-diarrheal way back, against the onc's advice, so no more yo-yo. Her nurse referred me to a nutritionist. That has been great. I think she is unusually flexible and tolerant of my habits, and works around them, but if you can find one, it is better to work with your "gut biome" than to keep medicating.

[CatLady2022 in reply to TammyCross]

The nutritionist wanted me to eat more protein and I’m more of a vegetarian. The meds pamphlet says not to eat too much fiber and of course just about every veg has fiber. What’s a vegetarian supposed to do, especially when I much prefer vegetables over meat and of course would have to completely change the way I eat. It’s bad enough my life has changed so drastically since my diagnosis, now I’ve had to compromise by adding more protein while also eating the fiber and I find that since I’m eating the fiber, I have less diarrhea but more stomach pains. It makes no sense really. Fiber makes me go more regularly without diarrhea but fiber also makes me have more stomach pains. I’d have to completely give up the vegetables which I don’t understand nor do I agree with as vegetables are the healthiest of all foods. Ugh!!!!frustrating!!!

[TammyCross in reply to CatLady2022]

My nutritionist gave me alternatives to meat for getting protein., since I prefer a mostly vegetarian diet. She said to order pea protein, unflavored, so I could put it on or in anything. I did have to cut back on raw vegetables, hard, but they convinced me it was temporary. I have been eating polenta, also has protein and I think fiber. Oatmeal, she recommended, and peanut butter. These are vegetables but they aren't meat. I have sauteed vegetables and mix them in with polenta, milk or yogurt with oatmeal, etc. I have a medication for cramps. You don't have to completely give up vegetables, just cook them more. Cooked carrots, mushy broccoli, etc. I don't like it as well, but they are vegetables. Smoothies, with yogurt and banana, and vegetables and berries.

[PJBinMI]

I'm a long timer with MBC (18 1/2 years!) and my Ca27-29 was very similar to yours. I think your results are great and hopeful. TMs are not exact and can be effected by things besides what our cancer cells are doing. I got almost five years from Letrozole and know of quite a few women who went on to get even longer from fulvestrant after Letrozole stopped working. Oh, and my Ca27-29 has only been in the normal range for a very few months right after the FDA approved the current two injection dose of fulvestrant...that second shot really did a whammy on the cancer cells. I think your results are full of hope for you and worth celebrating!

[CatLady2022 in reply to PJBinMI]

Knowing some women live longer than the projected 3-5 years they say is the norm, gives me so much hope. I was so depressed after my first few doc appts until I found this site and found women like you who have lived longer than the norm. Thank you for always sharing your experiences.

[SunShineEveryDay in reply to CatLady2022]

couldn’t agree more!

[PJBinMI in reply to CatLady2022]

But that 3-5 years is the median survival time, meaning half live longer and half live less! I strongly suspect the median survival time would be longer for those of us who are here on the internet gathering information and connecting with others who have MBC! Those median numbers that get quoted so much do not apply to individuals, but to groups of 10,000 and more! Even doctors don't really understand statistics! The numbers are brought down by people with rip roaring aggressive cancers, those who aren't diagnosed until the cancer has metastasized so much that they are having organ failure or other serious conditions, and those who just don't have the resources to follow a treatment plan. If we do well on the first treatment we are likely to do well on the next...... This cancer sure has most of us thinking about how it will end, but even now it is possible that we will die from something else, and until the last week or so, death is unpredictable. I've seen people die quite a number of times, starting with my mother who died from lung cancer in 1985. What I have seen has not been scary, but reassuring that my pain will be controlled and that I aam most likely to have a gentle death with my family near by. One of the few good things about this cancer is that our deaths will not come out of nowhere as a total surprise to our family. And if we can bear to talk about it, we'll have said the things we need/want to say to one another. I have told my husband that if I can, as I leave my body, I will hover briefly around the back of his neck to say "I love you!" again.

[Shafight in reply to PJBinMI]

I Love hearing from old timers. It means so much to know that some like you survive!

[Lilchim in reply to PJBinMI]

Wow! This is so encouraging PJBinMI! What do you attribute your 18 1/2 years to? I was diagnosed (recurrance) with MBC in 2020. I noticed a lump above my collar bone which proved to be a recurrance of my 2012 bc. No other lymph nodes, lesions etc. NED since 3months into treatment letrozole and 125 ibrance. My CA27-29 marker always in normal range. Blood work always normal until Ibrance. My oncologist tells me "years not decades". My biggest worry is not knowing what to expect in terms of progression and severity. As a project manager, it is difficult not to think of timelines and how quickly they move.

[PJBinMI in reply to Lilchim]

I think it is pure dumb luck! I just happen to have cancer cells that have been easily managed with standard hormonal treatment. After all this time with cancer and cancer treatment, I am tired! My memory isn't great and I've lost alot of muscle strength--using a walker at home, cane for short walks elsewhere, got a wheelchair at the local small town hospital yesterday when I was there for a scan. And it's really difficult to feel so dependent! For me, on my husband. We're both in our 70's and he's not 100% either. His younger brother comes here almost every day, mostly because we have the space needed for working on cars and other machines, but he can walk the dog when hubby is running errands, and often grills meat for our dinner. He eats dinner with us several nights a week and has house sat for us when we've gone traveling. Those traveling days are over! My bucket list isn't going to be done. Anyway, I''ve adapted to being not the woman I used to be! And I am not ready to die yet. We live out in the country with woods all around us and see alot of deer and other animals quite often. So I have alot left to enjoy.

[Lilchim in reply to PJBinMI]

It sounds like you live in a beautiful place with good family support, that is always helpful. I am sorry you are feeling so tired. Fatigue and weakness are 2 of my biggest struggles. My current treatment was not available when I first had breast cancer in 2012 so perhaps I can be fortunate that treatments will evolve and allow me to live longer that my oncologist predicts. Much love to you. I thank you for your inspiration and hopefulness.

[CatLady2022]

I want to thank everyone who responded to my post. I swear if I didn’t have this site with women experiencing the same things I have been experiencing at different times in our treatment, always gives me so much more hope than I would have if I only had my oncology team to rely on.

[Andersl]

I used to look at my markers when i was first diagnosed (stage 4 mbc) and when i had my first chemo.

I too was concerned when after months of significant drops they only moved down a little. Mine never went above 80 in the early days. I have no idea what they are now. It is the scan results that my UK consultant is interested in, not my markers. Now you mention them though i might see what they are

PS I liked Jackies (Libray Geeks) response and i totally agree with you.... where would we be without this site !

[love2golfwell]

Any drops are really good. Sometimes mine is down a few points, other times down more and sometimes up a few. My doctor always tells me that if I had the bloodwork done several days in a row, the numbers would be different as they are affected by things other than the cancer. They worry about significant increases each month that would indicate a concerning trend. As long as they are going down, it probably does not matter if they go down a lot or a little. Hope you continue these good results. Hugs