SHARE Metastatic Breast Cancer
1,805 members1,066 posts

Rising cancer markers

Hello everyone! Have any of you had your tumor marker continue to rise without your cancer progressing? It seems ever since I was finished with radiation 8 months ago my TM's continue to rise. My scan two months ago showed decress with no increase in size or uptake.

Thank you for any responses.

21 Replies
oldestnewest

One doctor I heard speak described this event as tumor marker freak out. Because of your scan result, I think that something besides cancer might be in play her. Tumor markers can be quite fickle and are easily influenced by whatever is happening to your body. They can get elevated due to allergies, sore throat, infection of a sort or even being in the same room as a smoker. Lack of sleep can also effect them. Try not to worry and most likely they will decrease

Wishing you the best

6 likes
Reply

I dont pay any attention to mine. They never moved in spite of scans that said "signifigant progression" I just pay attention to how my body feels and scans.

5 likes
Reply

Wise words for the posters to take into consideration

5 likes
Reply

Like the previous two replies, I have been told (and have seen) that they are fickle. I no longer ask about mine. The scans are the far more important indicators of what's going on.

3 likes
Reply

I agree they are not very reliable. But it still freaks me out until I have other tests to verify what is going on. Best wishes for your health.

3 likes
Reply

My doctor looks for trends- had a high 15-3 but the last two now have reached a plateau- so l am just going to take my pills like a good patient . Enjoying the summer keeping active riding my bike without a helmet!!!🚴😍

4 likes
Reply

Thank you all for your replies! I'm starting to feel a little relief reading all your replies. I'll know more next week when I have my scans.

God bless you all in your journey with MBC

Carol

3 likes
Reply

My kept going up although all scans showed only the ever-shrinking small liver lesion. - I am on Xeloda. After taking one complete cycle off while the oncologists tried to see what was happening the markers went down! So my oncologist has decided that perhaps my chronic sinusitis affects it (have had that since I was 10 and it really isn't fixable it seems) or the Xeloda itself is causing a bit of inflammation so am back on the pills and not worrying about the counts any more!

3 likes
Reply

That is great news for you!! My markers have been going up about 30 points since December after my radiation. My scan in April was showing decrease in bone mets. This months markers jumped over 100 points. My doc took me off of Ibrance after being on it with success for 15 months . I will start Xeloda tomorrow. I have a scan scheduled for Monday. I had minimal and tolerable side effects on Ibrance. I'm wondering how I will tolerate Xeloda. Any advice ?

Thanks,

Carol

1 like
Reply

Xeloda is fine- but it takes a bit to figure out what dose works for you. I've been on it for 15 months- my doctor started me out on the high side 2000mg twice a day 14 on 7 off- after trying multiple decreases I now take 1500mg twice a day - 7 on 7 off. My only side effect is the hand/ foot redness- use lots of lotions !!!! Take with food as well. Good Luck- it's expensive but once the deductible is met it's free.

2 likes
Reply

Hi Carol,

I was told that a treatment plan should NOT be changed solely based on tumor markers, but on scans, how the patient feels, and last of all tumor markers which, as they say, can be fickle.

An Oncologist at a leading Cancer Center told me that sometimes doctors get their patients off certain drugs and plans too early. If that continues to happen, then the patient will run out of treatment options.

She e-mailed my Oncologist with her input on his wanting to take me off my Xeloda. So, instead of changing things, he upped my dosage which she thought was too low for me.( It's good to get a 2nd opinion and I highly recommend it.)

I've done well on Xeloda. I've never had the hand/foot syndrome. And the best part is that it has NOT caused any stomach or appetite problems. Of course I was never put on a real high dosage. I really hope I can stay on this drug for as long as possible. So far I've been on it for over 2 years.

Wishing you well! Keep us posted!

Kats3

1 like
Reply

Hi Carol. I have been on Xeloda 2000mg to start with then upped to 2500 (2x500 morning and 3x500 evening) 14 days on 7 off with little problem. Hands and feet liberally treated with lanolin (milking salve works well!) and so far a very slight skinning on the balls of feet which quickly disappeared - maybe winter dry weather! The only other noticeable effect I have is in the first week on I get a sort of cold tightness high up in my chest going up into my neck when I work bent over or undertake more strenuous exercise. It goes off within minutes of stopping the activity and only happens for a couple of days. My oncologist does keep track of heart etc. just in case this is some sort of angina but, because it seems to be so high up in my chest and goes off quickly, she is not too worried. If this is the worst that can happen to me long live Xeloda!

1 like
Reply

Greetings :Staying_Positive, Sisters/Warriors,Overcomers I know this is going to sound crazy coming from a bible believing Christian ,but almost ten years ago I was told I had around a year to live after being diagnosed with triple negative breast cancer. I thought God I know no one lives forever in this physical body,but can you make sure I get into heaven (smile). I would use visualization techniques.I use to visualize myself wearing the body armor of God , battling and destroying the cancer sells in my body. I would also visualize , now I'm giving away my age (smile) Pac Man eating devouring all of the cancer cells in my body. Well I'm not in heaven yet, and I am still standing with the body armor of God and, no evidence of disease . I pray for all of us who struggle and have to fight to beat down this disease. You can and will stomp on cancers ugly serpent head and W-I-N- this war .Amen, Amen, and yessssssss Amen. Keep faithfully fighting!

7 likes
Reply

God Bless You RLN-Overcomer. Thank you so much for your story. It gives me HOPE. I was diagnosed in 2014 with Stage IV Metastatic Breast Cancer and given 2-3 years to live. I have been so blessed that my cancer has only minimally spread to a couple of lymph nodes. I have been on chemo the entire time and have had to change it about 3 times after it would quit working. My Oncologist told me that I would be on chemo the rest of my life. I am okay with that as long as I can maintain a decent quality of life.

My question for you is, have you been on chemo the entire time since your diagnosis? My doctor told me that the type of cancer I have tends to get immune to a certain chemo and that is why I have had to change my treatments. I was on Kadcyla for 22 months until October 2016 when it stopped working. My fear is that I will run out of treatment options.

You are amazing. I am so happy that you are doing so well. God is great!

1 like
Reply

Greetings: Cowgirl2, Sister/Warrior/Overcomer I have not been on any chemo or prescriptions drugs in almost 10 years.I believe God has made some amazing natural supplements known to me.I take 13 supplements in the morning and another 13 at night.I eat by a book called blood type/body type diet.I exercise by using a custom work out routine I created for me. I sleep a little more than 7 hours daily,and most importantly I put my faith/trust in God/Creator. My cup is not half empty or half full, It is full full overflowing with infinite blessings.Still loving,laughing and living life to the fullest.I pray for your complete healing/restoration, as I do my sisters and yes some of our brothers who are encountering the struggle with this disease.What doesn't break you will only make you stronger.Stay strong warriors.

3 likes
Reply

Amen. God is great. I put my faith in him completely and I know that he will take me when he is ready. May I ask how, when or why you decided to do supplement therapy and follow a special diet plan? I have thought about trying it myself but don't even know where to start

Did your doctor recommend chemo or radiation?

I truly appreciate you sharing your story with me. May God continue to bless you each day 🙏😊🤗

2 likes
Reply

Cowgirl2/Overcomer: I have always been more into health and wellness than most people in my life. When I learned beneficial information from books, research ,and from God sent earth angels, I subsequently incorporated these/those healthier modalities in my life .I think it is important for you to be able to have access to the book" Bloodtype/Bodytype diet", to guide you on the very foods,supplements, and drinks you should or should not ingest . This will allow your body to operate at it's optimal immune function, so that it can combat any potential invader.You will have to know your blood-type. You will be shocked to learn, that the very natural foods,supplements, and drinks you may have thought were healthy for you to ingest,could be detrimental,toxic, and in complete opposition to what is good for the optimal immune health of your blood type( body.)Your diet won't be limited to eating straw.grass, or foods that don't taste good. You will have a great variety of delicious choices.There are even, some biblical supplements, and grains that I have incorporated into my diet that are beneficial to those people who have the same blood-type I have. I hope this information has helped you, and any of my sisters/ brothers reading this post. God did not keep me here on earth to care about me serving myself. Lord/God kept me here to pick up and,help my sisters/brothers along my journey.God wants us to do our part, and our God/Creator will ,as promised surely do the rest. Amen !

2 likes
Reply

Thanks for your words of encouragement

Reply

As others have said here, things besides progressing cancer can cause a rise in TMs. One of the limitations of TMs is that they can sound alot more precise than they really are! Numbers are very specific, but TMs really can bounce around alot and mean nothing at all in terms of cancer. And I have also heard that treatment decisions should not be made based on TMs along. My onc pays most attention to how I am feeling, then scans, and TMs a distant third.

One thing that really irks me is that some oncoloigsts, and other physicians who should know better, use median survival statistics as though they apply to us as individuals. They are not meant for that at all and are only valid for population groups of 10,000 people not for 1! Those stats are compiled for purposes of health care planning (big picture), such as how many physicians are needed and how many hospital beds etc, not to make predictions for an individual patient! Plus the median is greatly pulled down by those who are really really sick when diagnosed, those who cannot for whatever reason particpate in treatment, and those with extremely aggressive cancers. Most of us who make our way to on line sources of info are not super sick at diagnosis, have resources, and are educating ourselves about this cancer.

More and more of us are living longer and longer. I was diagnosed denovo, mets from the get go, in March 2004, over 13 years ago. I have heard of a number of 20 year survivors, know several others who are 10 year survivors and met a 30 year survivor at a BC confernece in Boston several years ago.

For those who like the idea of visualiztion, a psycholoigst named Belleruth Naparstek has recorded some wonderful CDs and iPod downloads which are for sale at healthjourneys.org . Her voice is very soothing and she uses visutalization and affirmations to help with many different health issues besides cancer. I have her Cancer and her Surgery CDs, and after using the Surgery one now when I sign in for a procedure of any kind, my blood pressure reads in the normal range--before using this, it was always rather elevated, like 140/95 or so. (It may be healthjourneys.com--my short term memory isn't good for stuff like that anymore and i would rther blame "chemo brain" than age! lol)

4 likes
Reply

Rising markers with no change on scans is no concern for my oncologist. She said that they can fluctuate without cancer metastasis. We have to trust our oncologist, It doesn't necessarily mean that we won't be concerned.

1 like
Reply

Thank you everyone for your replies! My scans showed a little progression in one bone and a small plural effusion with tiny nodules. My doctor thinks he can tamp this down with xoloda. Oh the ups and downs we warriors go through in this battle! Feeling blessed that I'm still alive and feeling good.

Hugs and God bless you all!

Carol

Reply

You may also like...