Dear friends I know there are several threads on this but not sure I see my case in them. I was diagnosed with MBc in July 2018. I started on Ibrance and Letrozole. Mt tumor markers decreased over time...nearly by half. My 1st PET Scan showed that most tumors either resolved or cut in half except for one one my pelvis that grew a small amount. I have been having some lung and hip problems that have been evaluated with MRI and CT Scans and again all results speak to reduction in size of tumors. I see my oc every 4 weeks. The visit before today showed a modest rise in CA 15-5 to 51 and now today it is 141. I am scared to death. The result was not back before I left the doctors office and so we had no discussion of it. The CEA was back and I asked her about that rise from 2.9 to 5.1. She said markers aren’t very specific but the CA 15-3 is rather specific and all the other things that can cause a rise are serious conditions as well. Has anyone had a jump in their CA 15-3 like mine and had it turn out to not be anything of concern?
Frightened CA 15-3 increased sharply - SHARE Metastatic ...
Frightened CA 15-3 increased sharply
Hi there
My situation is similar but not the same as yours
I was diagnosed April 2018 with many sclerotic bone mets CA 15-3 was over 1000 and CEA 11
These dropped dramatically to 117 and 8.3 in a few months
However in the blood tests since October they have gradually gone up to 157 and 15 respectively
Like you I’m worried yet my last scan showed stable bone mets and a pleural effusions disappeared completely
I’m staying on the same meds Ibrance letrazole and denisumab and having another CT in 2 months..my oncologist has mentioned changing meds but not till after next scan or if markers double or rise dramatically
I’m managing quite well on theses meds and fear changing to something else which has side effects I can’t cope with
The marker rise i had in October was put down to the fact that I had surgery..vertebraplasty in T5 and it was explained that tumour markers can rise for many other reasons..but like you I’m very worried
Chin up
Barb xx
Can’t put 100% trust in 15-3 my last one was 422!!! My baseline was in the 200’s it’s a roller coaster ride every month. Have them rechecked need to see a trend than look to scans for a better view. Keep positive!!!
My oncologist likes to work on how I feel and on any physical signs (and scans where appropriate) to get a real feel for my state of health. My 15-3 rose dramatically when my liver met first grew but although the met has not shrunk as far as I know my 15-3 has dropped to below 150 now. However my CEA is a stable 200 and CA125 has gone up to over 250 - but I feel pretty well fine and she has kept me off any treatment again. I think the markers may serve as a guide at times but they are affected by so many things - mine rise every time I have sinusitis!
Good luck
Thank you very much! Interesting as I just went through a bout of sinusitis...will need to keep an eye on it
Things besides progression of the cancer can cause rise in TMs, which is why many oncs don't use them at all as they can cause needless anxiety in patients. One limitation of many of the scans used is that they take pictures in "slices" and where in the lesion the "slices" fit, they can be bigger or larger. Imagine slicing a hard boiled egg. Where in the egg you slice will determine the size of the slice and the size of the yolk within the slice. My long time onc recently retired but she was a very experienced onc and was well regarded by other oncs including the bc specialist I saw for a second opinion. She always said she paid most attention to how I report feeling. Scans second and TMs a very very distant third. I've done extremely well since being diagnosed with bone mets from the get go, and I have known when I have had progression. And we watched TMs rise for a long time before changing meds. I was diagnosed in 3/2004, and got almost five years from Femara (Letrozole) and over 9 years from Faslodex. We added Ibrance to the Faslodex in 2016 for ten cycles and it did some permanent damage to my lungs (Interstitial Lung Disease, which causes shortness of breath, helped by two different inhalers). I am now on Aromasin, since Jan. 2018. I was initially on Zometa for the bone mets but since I was allergic to it and needed reduced dose, premeds, etc to accommodate that, we switched to Xgeva as soon as it was FDA approved. One limitation of the bone meds is that they are still relatively new and best long term dose and frequency aren't really figured out yet and that probably varies person to person. I had to take a break from them for a couple of years as my bones had become brittle on the outside and soft on the inside, revealed by unrelated to cancer back surgery. As a long timer living with mbc, I gotta say that if I were a worry wart, there would always be something I could keep myself in a nervous tizzy about. It's really helpful to focus on the long term, big picture and not on the TM numbers and rib fractures! Find an onc you trust and ask the questions that you need to ask. If you develop a new side effect or symptom, call and talk with the nurse that works with your onc. Don't sit at home and stew about it. Talk with your onc about when to call at 10 pm on Friday night and when to go to the ER and when to wait til monday morning to call.
One of the extreme things I did early on, and that makes me grin now, was I made a list of every OTC drug and supplement in the house and showed it to my onc and asked her what I could safely take and what not! I was concerned I'd just reactively take an asperin or cold medicine without thinking about it. The only thing she told me not to take was Vit E and she said nobody should take that. A previous doc had told me that Vit E is good at helping surface tissue heal and I have it to squeeze the oil out of and rub on my skin. That has helped my various incision sites heal with minimal scarring. That is okay she said but not to consume. I wish everybody with bc had cancer cells a s easy to keep under control as the ones I'm dealing with have been!
PJB! wow, I'm glad I read your response...! You're now my role model! 
A week or so back, I recalled reading a post from someone on this site that they lasted 4 years on Letrezole then 9 on Faslodex...and I looked around for a while to find that post, but couldn't find it...it must have been you! I was so encouraged to read this because I recently (about 4 months ago?) switched to Faslodex after having been on Letrezole for about 4 years. I was feeling less than happy about this because from everything I could find online, Faslodex does not - on average (but we love the right side tail!) - last particularly long as a second line treatment. So I was recalibrating my expectations - but not my hopes!
Seeing that you more than doubled the duration of your second line treatment is very encouraging...Let me ask you a potentially flakey question...do you have any theories on why this is? Is there something you're doing that might have a positive effect, even with out scientific backing? Or is there something that just is -- I don't know, age? Environment? Something in your original tumor makeup (some measure of aggression)? etc.? -- that you see as correlating or contributing to the remarkably slow progression?
Thanks! Lynn
Lynn, I really don't know why I have done so well for so long! But several members of my family have done especially well with various cancers and my onc and the genetics counselor I spoke with both suggested that we probably have some genetic something that doesn't protect us from getting cancer but does allow us to do well for a long time with cancer. My grandmother had an endometrial cancer in her 70s in the 1950s and lived to be almost 102 with no recurrance, and 3 of her 6 grandchildren have lived for longer than usual with various cancers. I have not made changes to my diet though I did not use any alcohol for the first couple of years. I've never been a big drinker but I just didn't want to feel any less control over my self and my body. Then I decided that since I missed having a nice glass of red wine with pasta or a beer with Mexican food, that there was no real point in depriving myself. My dad' s family has been long lived for generations. He did alot of genealogy and found ancestors living to be 80,90, 100 back at far as the seventeenth century! He lived to be 87 and his sister lived to 96. I'm 72 and don't have a clue how long I'll last but when I was younger, I saved money to last me into my 90s! lol
I forgot to add that's Iv'e known several women who got longer on Faslodex than they did from an initial AI. Faslodex was sure good to me. And when i was first diagnosised, a number of women with E + mbc who got good results with hormonals and each eventually failed them after awhile, would go on low dose estrogen for awhile after 3 or 4 different hormonals and it would work awhile and would "reset" the cancer so they could recycle thru hormonals they had already used. I may do that when Aromasin fails.
PjBinMl do you take anything other than Aromasin? Or have you taken anything with your estrogen blocker in all these years?
PJB, thanks so much for your response - it's not only encouraging, but also interesting re; the cycling onto estrogen to reset...I love that idea!
I'm doing pretty well so far and my sister, who has metastatic TNBC - diagnosed at the same time - is doing amazingly well, given the initial prognosis. I had asked my docs about this and they indicated that we might have something in our biology/genetics that helps fight the cancer to slow it down..."seed vs. soil"...so the soil part. With my sis, I think there's a case to be made that her walking/running for probably 10+ hours per week helps...I read somewhere that cancer cells hate heat and oxygen...The only healthy change I've made is to go vegan, and buy a fitbit (!), and I have taken up a bit of walking/running but not enough to really count yet.
BTW, my sister joined a study of "Extreme Survivors"...you might want to do the same? I forget what qualifies as "extreme", but she qualified earlier than I would based on the 3N...I'm certain that you qualify, if you're interested. I think it could be helpful to everyone if "they" learn more about those who far exceed the averages...
Here's a link... med.wisc.edu/news-and-event... **BTW, I just began the process just to check it out before passing it along and it seemed to just ask for basic info like age, mets/no mets, and contact info, which seems odd, i.e. no real qualifying screeners. Perhaps they are looking only for certain ages now?
And I appreciate your comment re: having saved enough to live into your '90s! I try to figure out how to pace myself, financially, but end up veering between justifying extravagances due to my prognosis (which I've never once regretted! ), and thinking, gosh, if I end up living past 80 I'm going to have a lifestyle adjustment! Which would be fine, of course, well worth it!
Be well.... Lynn
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Lynn, thanks for this link! I will use it. I talked to a nurse there over two years ago and was told she'd have one of the investigators get back to me, but it didn't happen. There's a similar study at one of the big East Coast cancer centers, maybe Dana Farber?
For anybody who fills out that form, the US country telephone calling code is 011. I had some trouble finding it! lol
Thank you for sharing your story. It is very encouraging. I am though also experiencing shortness of breath. Pulmonologist can’t find a cause but I have inflammation in my lungs and treated with 2 inhalers as well. I fear I am developing ILD also but the interesting thing is I had these symptoms when I was first diagnosed and not on Ibrance. So it is puzzling to say the least.
Why no Vitamin E? I asked oncologist and pharmacist and both said it was fine. Now I am worried since I added this about a month ago. Thanks
It’s true! Mine go up and down all the time!!!Don’t worry too much about it...🤗
CA 27.29 Blood Testl
CA 125
CA 27 29 fluctuating 
