I was upset yesterday after my blood tests my marker has risen from 609 to over 1000 since last month so I’m having another scan next month and go from there....I’m only starting my fifth month on exemastane and everolimus so feeling panicky
I have at the moment a really bad bout of cold sores all along my lower lip...not only do they hurt but I look hideous ( only good thing about lockdown!!)....anyway my question is this...could this have affected the markers do you think?... I’m clutching at straws here as I’m just scared my new drug regime isn’t working and the disease is rapidly progressing
Anyone else had riding markers due to something else
Barb xx
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My markers have never been a good indicator of my disease so I can't comment on what could be possibly causing yours to rise.
My only advice re the cold sores would be (and I know you do a lot of this already) boost your immune system. I'm juicing broccoli, kale, carrots, apples, pears and bananas daily and taking a mushroom supplement on my porridge plus vitamin C 1000mg per day.
I'll read any other replies as I'd be interested to know what drives tumor markers (up/down) other than our disease for people like me where they're not a reliable indicator.
I’m sorry to hear that you are concerned about your markers. I am not an authority on tumour markers, as I’ve never been told what my numbers are.
But I suspect the cold sores are really the culprit. If your markers have shot up just within the last month does that coincide with when the cold sores developed? Perhaps it’s just an indication that your immune system is kicking in. I would call your oncologist or oncology nurses and see what they have to say. Please keep us updated on how you are doing, Barb.
I’ve texted her this morning...I had a telephone consultation yesterday so obviously she didn’t see the cold sores....she did say it could affect the markers but wasn’t saying anything definite...vague!
It’s tricky when you don’t have a face to face consultation. Can you ask for a Skype or Zoom meeting next time? I suppose your oncologist was being vague because she just doesn’t know one way or another. Mine is like that sometimes. My husband thinks she is being evasive, but she doesn’t always have an answer to my questions.
Hi Barb I have heard many things can change markers. I believe the cold sores could definitely play a part. I was told that stress can cause the cold sores . Tumor markers are affected by any infection in the body. So it seems to me that if you have been stressing over this new medication or anything else right now in your life that this caused the cold sores and then with the new medicine doing its job of killing the cancer .You now have dead cell shedding and the infection the body is fighting all upping your tumor markers. Please try to relax ( easier said then done) don't borrow trouble. Wait for the scan results in the mean time Ill be saying prayers for everything to be just fine!! Hugs from afar!
Well I would have expected a rise soon after starting new meds but the markers had slightly dropped last month so I was chuffed but I’m starting my fifth month so that’s why I’m concerned...what a life!
I totally understand your worry! When I switched to Fulvestrant five months ago my tumor markers continued to rise , I felt dizzy often and had more bone pain. I was scheduled to start a clinical trial last week but before I did I had a CT and bone scan and was completely shocked to learn that I was stable and areas in my bones were healing. So needless to say, I am continuing with Fulvestrant until that stops working. The rise in your tumors could be a number of things, for me it was tumor cells dying off. I hope you are able to find relief for your cold sores and not worry too much before your scan. Sending love!
Sweet of you Jade to tell me that...I thought after new meds for four months that the markers would continue to drop....it’s all so worrying...you ladies always understand...nobody else gets it
yes, that's what has caused it! all the tumors dying off YAY! sorry you are having troubles and am sending prayers! <3 xo stay safe in Jesus name, amen PS oh on a side note seems like everyone is raving about taking zinc for the immune system. I know it's probably old news but if it doesn't hurt anything, why not ... personally, I'm just tired of taking pills so I just stick with my letrozole, ginger etc.
Hi! I read your comment on the Fulvestrant so it prompted me to ask a question. I’ve had my first round of shots (4). This month I’ll start my (2) shots. So I’ve had terrible muscle spasms and hip pain for a few days. The worst part is poop and all keeps coming out involuntary. I took Imodium and it helps for a few days then it starts up again. My OC changed my medicine to the Fulvestrant because my cancer markers are going up. I was on Letrazole. I’m at 215 now. I was going to stick it out for a few months to see if this treatment will help the markers go down. My OC thinks the stress of the hip pain and muscle spasms could have affected the TM. I feel fine otherwise. I’m still on Ibrance. My disease seems to be mildly progressing. The medicine affects me worse than the cancer in the bones. It’s comforting we’re not alone in this battle. We know Jesus feels our pain.
Thank you!
Oh Barb. I’m sorry you are upset. I don’t know anything about markers. My oncologist doesn’t use those. Give your doctor a call and ask. That is the quickest way to get a decision ❤️
Sandra you always talk sense...it’s so easy to be negative and I must say I’m a bit obsessed with tumour markers because when I was on Ibrance they slowly crept up and it was because I developed liver Tumour so I’m just assuming the worst
I’m going to try and ignore this as best as I can because as you said it won’t Change a thing
I do hope you’re right and it’s the meds murdering those bastards!
Barb xx
Barb - I too struggle with cold sores. They’re unsightly and hurt. They are a week coming and going. Mine can be the size of a dime or a nickel! They cluster around my mouth or under my nose if I have to blow my nose a lot. So I definitely understand that part of your frustration.
For me, they are definitely linked to fatigue/stress or too much sun. When that happens, I’m run down and my body is telling me to be more careful. I hope that is just the case for you.
I will tell you that I’ve noticed my already low WBC decline when I have a cold. Then it corrects on the next CBC.
I don't know how to comfort you but I think you should stay positive. I think the markers are only really for the doctors to determine how to treat you. That is what I was told by one of my doctors. I don't think it is as serious as you are thinking it is. Anyway, if your new medications are wrong for you they will likely switch you to something else. I will be thinking of you. Hugs Marlene
There are few products that you can use to increase your immune system at the same time with the medication that you take. One it is Vit C but it must be at high doses, at least 3 times a week, Glutathione, and ozone therapy. These are usually done by functional medicine doctors in office IV. But they are very helpful. If you can not do the IV, you must get Liposomal Vitamin C which if you take enough can be like IV or Vitality C powder and you will increase your dose slowly to 12000mg. You can ask you doctor to make sure it does not have any conflict with your medications. Of course it shouldn't but you can ask before adding these. Also, watch a movie Called HEAL on netflix, and watch information done by Ty bolinger on cancer. There are other product that out there which can help to boost your immune system and they are anti viral. If you like you can call me. Take care. I am sure you will do research and information can be very helpful. Be Well Soon.
I can understand that you must be worried, I would be too, but as you said, no amount of worrying changes anything.
I’ve also been told scans are more accurate than tumour markers and many things like infection etc can affect markers.
I hope and pray following your next scan that all is OK. However, please keep in mind there is a whole tool kit of different treatment options out there.
Hi Barb: Can't add much to all the other more informed answers. My oncologist says they never pay attention to tumour markers. Must be the new thinking because I think they used to be a tool in diagnosing. Wishing you the best,
Markers don't work on me. Infections and stress (think Cocid-19) do affect markers. I, too read somewhere that chemo and Vitamin C have a low interaction. I just did a check and it doesn't show up but I had checked a lot of things on one of those checkers and it did show up as a low reaction. It also showed low reactions to a prescribed drug I am taking. I talked to doc about it. The advice is if you need to take it, it is better to take it, but if you don't need to take it then don't. Hopefully, your markers are on the way down and your scans will be stable. 🤞 Blessings, Hannah
Some times TMs will rise alot early in treatment with a new drug (new to you) when the drug is working and dying cancer cells confound the TM. It's called Flare and I have only heard of it with meds for hormone receptor positive cancer but it may not be tht limited. And alot of things besides the cancer can make TMs rise. For some of us, a rise of 400 points would not be considered a big rise--TMs are highly individual! One reason many oncs don't use TMs is just what you are going through. They can cause anxiety, and sometimes the rise in numbers is not related to the cancer at all. I'm sorry you have the cold sores! The last couple of BC conferences I've attended had quite a few oncologists talk about cancer being an inflammatory process and that lessening inflammation can be helpful. I had just gotten a list of things to take to reduce inflammation from my primary care doctor, a woman DO, who moved away soon after that. Her list was to take these daily: 1 cup of tart cherry juice, fish oil, turmeric and glucosamine/chondrotin. She told me that had been suggested to her by a pain management specialist she had seen herself. I tend to be skeptical about "supplements" but I trusted this coming from a doctor plus I ran it past the one person I trust about supplements, the founder of the Annie Appleseed Project. She agreed. If you have bone mets, taking calcium is a good idea, too. Unrelated to cancer, I broke my left ankle in a fall on the ice in 2012 and it has always been swollen since then. I did start using tart cherry juice and turmeric and within 36 hours, my ankle was significantly less swollen, which told me I was on the right track! Turmeric is the spice in curry and is also called cumin. You can buy it in the spice aisle or buy capsules of it--I have only found it in capsules on line. I hope you can find a way to stop "obsessing" about tumor markers! You will save yourself alot of anxiety if you can do that. I know you aren't in the US and I don't know if you would have access to these, but a psychologist named Belleruth Naparstek has studies the mind-body connection extensively and has created alot of audiotapes to help people with a variety of health issues and concerns. I first heard of her at a BC retreat when one of the retreat leaders played her BC CD. Her voice is incredibly relaxing and I have listened to her enough that I just have to think of what her words sound like and I relax right away. I found a place to buy her work just by googling her name, and I even misspelled it, got the vowels in her last name wrong. I used her CD on Surgery and when I checked into the hospital for a procedure, my blood pressure was in the normal range, very unusual for me to have that when checking in for a procedure. IT has also helped me relax for MRIs -- the noise makes me want to hit somebody! Anyway, her work is available at healthjourneys.com I hope your scan will show stability or improvement. Do keep us posted!
My markers are high. I too have lip blister and sore throat from my new treatment with a Abraxaine 3rd treatment yesterday.
I have heard any stress on your body can raise your markers. And I think mouthsores qualify.
I do notice if you are not having lousy side effects like mouth sores the drug is not working.
Just finished 3 mo of Gemzar no side effects numbers went up she changed drugs am losing clumps of hair after third week and sore in mouth so I hope this one is working. She will do numerous in two weeks.
Hi Barbara; I was wondering how you are faring on Abraxane. I started losing hair after the second treatment too. Having it fall out in clumps was definitely harder than actually not having hair. I'm used to that now, have lots of caps, scarves and one wig for special occasions. Regarding mouth sores, Barb recommended Mucosamin spray and I think it helps. I got it on Amazon UK; I don't think it's sold in the U.S. My ND oncologist also suggested that I swish regularly with a salt and baking soda solution: 1/4 tsp salt, 1/2 tsp baking soda in a cup of water. I make a cup in the morning and have it on the counter to swish when I think of it. I also do it at night if I wake up to go to the bathroom. He suggested doing it every day, sores or not, to help prevent as well as heal sores. Maybe gargling it a little would help your throat too. My numbers didn't go down after the second treatment but dropped a lot after the fourth one. Hope yours do too!
Doctor sent me mouth swisher, but agree will do with baking soda also maybe prevent new ones.
My hair was just starting to come in from the Taxol. But it came in so ugly frizzy it is horrible. I have been wearing wigs for over a yr. have about 10 now😂
I had no side effects on Gemzar for three mo was not working. I hope abraxane is working. Since I have side effects.
I did find if I take 8mg of the decadron on day 3 and 4 it keeps the swelling in my legs a little better. Hope you do well on Abraxaine also.
I don’t get mouth sores so I can’t say anything about whether or not it has affected your markers. But...if you count this quarantine as a stress, and I do, it wouldn’t be surprising if all of our markers weren’t up. I have felt awful all day, headache, tired, slight nausea. I never feel like that but I swear I am so tired of staying home that it is making me feel bad. I hope this is just a blip in your numbers and they go back toward normal. You are right. What a life!
I’m so sorry you’re feeling poorly and depressed over the virus situation...and it could go on for much longer as there seems to be no plan in place and nobody seems to know what to do
I’m not going into shops much as hubby does most of the food shopping....I do go for little walks and drive to the stables to see or ride my horse which helps me mentally and I get some exercise otherwise my pain would be worse
However I’ve seen people breaking the rules lately...sunbathing in parks and not distancing and yesterday I couldn’t believe my eyes...I passed a bus stopping at a bus stop to let people off...the bus was crammed with people and not a mask in sight!!!... surely this shouldn’t happen as what’s the point of other people being sensible then others happily transfer the virus?
Sorry I got carried away there!... that was enough to stress me for the day
Hope your lips are getting better boy do cold soars bring you down I was suffering a lot last year and my doctor gave anti viral tablets and large tube of cream I found the ones from the chemist dont last a day .had my liver biopsy thur what an outing that was but no doctor there to discuss when I will start anfinitor my daughter is going to email him in the week she is much better with words than me I just end up crying so maybe she will get some answers to when I can start . Hope you have a lovely weekend and my thoughts are with you take care x
Hi, when I started ibrance and fulvestrant my markers rose at the 4 month mark and continued for a few months before dropping back. My oncologist said that it wasn’t uncommon for that to happen and he based my treatment on the scans which were good.
Hi Barb, I am sorry to hear this. They don't test me for markers so not sure what you are referring to. I have been having issues with 2 teeth. CT scan showed something about my left sinus cavity. I went to the dentist and I have severe infection and going to loose 1 or both teeth. Dentist said to rell my oncologist. Meds could be the problem. I am in my 7th month on same protocol as you. I sometimes get a cold sore and the roof of my mouth swells up. It's always something isn't. I will keep you in my prayers.
Hugs
Robin
Maybe run down a bit Barb. You’ve not long had an op and as you well know your body was under pressure from that. You may not have recovered fully even though you feel like you have. Im confident you will keep us informed as to how things go. Will be thinking of you.
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