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Discouraged

I know so many of you post about measuring tumor markers and I know a lot of onc's don't rely on them but my doctor does take them and for the second month in a row they are up. I am trying not to freak out and I do have orders in for scans so just have to schedule them but I am just so bummed. I am doing so many things to help boost my immune system; eating right, exercising, taking supplements, I am only using clean non toxic products and I think why?? I hate feeling like this and thinking the worst but its just so damn scary sometimes. I have cried all afternoon and am exhausted. I just needed to reach out for some encouragement.

Thanks,

Kim

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Almost 5 years here. Mets to lungs. Don't follow markers. Get CT scans once or twice a year and my onc has kept me pretty stable with a few drug changes over the years -- letrozole, added Ibrance, changed from letrozole to Faslodex . All this after getting the lump excised and radiation, chemo. I am in a slump right now myself, low energy, burnt at work, need a break, but have tried to juice and do good things to keep enjoying my life. I was in a horrific tail spin after I was diagnosed. I was mourning myself, scared, hopeless. After a few months I said to myself, I could live for years like this. There are people without Cancer who won't live to see tomorrow. Anything can happen. We have the extra (intense and horrible) burden of having this incurable disease hovering around us like a spector. It takes lots of energy, positive self-talk and effort to fill your life with the people and things that bring you joy to counter this spector. I think going into a downward spiral once in a while is part of this. It's really more than a person can bear by themselves. I go to therapy and take antidepressants. I get a facial, listen to Pema Chodron (my favorite Buddhist nun) and count my blessings. Sooner or later I am up and going again. And believe me, it takes a ton of energy, I am no Pollyanna. What sparks you? You sound like you put forth a great effort to stay well and keep engaged with life. Why? Because the alternative is to become morose and wait for the end. What a waste of all the time you've got left -- and it could be a really long time! Don't let Cancer take anything more from you. Get help if you need it, call the SHARE hotline if you need to talk to someone (I've done this a few times and it really helped). We could both be having this conversation 10 years from now!

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You are awesome and everything you say is so true. When I get like this, I need someone to remind me of all these things. I do see a therapist and actually have an appt tomorrow which is good timing. I don't want to waste the days I have on feeling down - I have a grandbaby coming next month which is our first and such a blessing. I am going to check out the nun.

Thank you so much for your response and encouragement. I find you so inspiring!!!

Kim

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We are all awesome. The worried well (my term for people with no chronic serious health issues) don’t have a clue I didn’t. MBC really challenges and changes your perspective on things 💫

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Hey Kim, so sorry to hear that you are dealing with this. The marker merry-go-round can be so dizzying. I appreciate that they are a relatively easy and non-toxic way to get an overall view of what's going on inside, but as everyone says, they are not reliable and there are other things that can make them go up. If you want to go down that rabbit hole, here's a site with a table of different markers and what might cause them to rise.

oncolink.org/cancer-treatme...

My CA 15-3 has ranged from a high of 927 to a low of 18 in the past 17 months, right now it's around 270. That number would have panicked me last summer, but it's lower than it was last month and I'm optimistic that my new Faslodex/Ibrance combo is going to knock it lower. Meanwhile I feel pretty good and life goes on.

It's good that you'll get scans, to ease your mind and to catch any progression early. I wish I had advice for how to make those less nerve-wracking but I hate them too - I'm getting CT's in May before I go to Dana-Farber for a second opinion and already I'm nervous about that.

But I so applaud you for being proactive and doing what you can to support your body's natural healing ability! We may not be able to stop all progression but I really believe that anything we do to boost immunity is helping. Hang in there!

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ty for the link and info!

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Thank you so much. I will check out that website. One day at a time is how I am trying to deal with this.

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Hi Kim. Nancy's post above is so heart felt and honest and I think sums it up like nothing I could possibly write. What I will add is that markers are not any source of truth for many of us. My marker was barely out of the normal range when I was diagnosed and yet my cancer had spread to my entire skeletal system. So my oncologist takes them monthly with my regular labs but she is quick to point out that they usually don't reflect much. All of us deserve and will have those low times when our minds take over and we imagine the worst and crying is therapeutic. When you are done think of something that gives you Joy and go do it. We will be here for each other for a long time. Sending you hugs. Feel better soon.

Sandra

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Thanks Sandra. I will pick myself up and dust off the pity party and move forward. I just love that we can vent and express ourselves here and there is no judgment and everyone understands.

Kim😊

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oh sure you could (write such a post)! we are all fabulous.

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Kim, it is maddening isn’t it?! We put so much energy into doing all the right things, its exhausting.

I have found Reiki to be extremely helpful.

It’s very relaxing. It’s helped me heal from past grief and trauma and I’m finding I bounce back quicker from stress and disappointments. I also find Native American music to be soothing.

I agree with Sandra, do something you love that gives you joy. I hope you feel better soon. xo

Robin

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Dear Kim. I'm a terribly naughty person. My daughter is a non smoking/drinking vegan. I on the other hand... Her mumma.... Eat sugar, drink alcohol, and I am going to spend my last years being careful. I totally understand your being sensible. But my thought is... People who have been sensible all their lives get cancer.

I sooooo get that you are scared. But I say...... Do what you want. Live how you want. Make this all matter. That's all we have.

Take care sweetheart. I hope your tears have flooded you with self knowledge.

Swim in them, and into this next phase. It may or may not be good. But you are.

❤️

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Hi, I'm with you all the way! I live my best life! We only have TODay and if you want to sit and feel sorry for yourself, you are wasting your valuable time! I, too, drink alcohol, eat sugar and have fun! I've raised 4 wonderful children, buried a husband and have made it to be 76 years old! When the time comes to be sick in bed, then, oh well! I can get scared but what to do, what to do? So I pray daily for strength, try to do good thing for folks, and smile most of the time! Onward and upward, my friends! Don't let this cancer win! Happy Easter and God bless you all! Kathy

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You are right. God promises tomorrow to no one. I will get back on track and all of these posts are what I needed. I gentle kick in the butt to re-focus and live life to the fullest each day.

Kim

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You are right, Timtam. There are poster children for great health who are able to pass up sugar, coffee, alcohol, go vegan...I do think these are savvy practices and no doubt contribute to better health, but no one is immune from cancer. My goal is LESS sugary snacks, more veggies. But absolutes make me want those things even more. Moderation?

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Nstonerocks. That does happen to me too. As soon as I tell myself no, I want more. But because my partner is dying at the moment, I think I’m doing the comfort thing. But I think I will settle down soon. Maybe. But really. As long as I’m happy enough in some things in life..... that’s to me is the only key right now.

It does not however, translate to being a bad person. I still want to leave a good footprint.

Love to all.

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Oh and i feel so insensitive. I am so sorry to hear about your partner. My thoughts and prayers are with you both. Hugs, Kim

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No..... not insensitive at all.

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Thank you so much!!

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Hi Kim

Mine have been creeping up since October ...a total of 100 points from 118 to 219 so like you I’m worried

I’m having a scan soon then decision time re meds

I don’t want to change and I’m now seriously thinking of trying some off label drugs alongside my current medication but even nervous of doing that

I know I’m not helping you with this post but at least you know I’m feeling exactly the same as you

All the best

Barb xx

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You are wrong, it is helpful just to know that someone else feels the same way. I will be scheduling my scans today so should know what's going on in the next few weeks. I hope your scans are good. My thoughts and prayers are with you.

Kim

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Thank you Kim

Hope all goes well with your scans

Barb xx

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Like Sandra above my tumour markets were within normal ranges when I was diagnosed with widespread bone mets and have stayed at around 22. According to them I don’t have mbc! They aren’t a good indicator and so many things affect them. Don’t waste time worrying, (and I know that’s easier said than done) your scan will give a better indication.

Julie x

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Great response. Chill on the tumor markers! It's the scans that tell you what's going on.

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Hi Kim,

I just wanted to send some encouraging thoughts your way. My oncologist has never even mentioned tumour markers to me, so I have absolutely no idea what others are talking about when they say this or that marker is high or low. But what I will say is this: you do not know what is going on yet until you have your next scan. The scan will be able to show if there is any progression or if you are still stable. Then based on the results, you can hopefully carry on with your current treatment plan, or switch to something else if your oncologist feels that would be in your best interests. It is so easy for us to worry that something is going on, when in fact it isn't! You may be fine. I really hope for the best for you.

Take care,

Sophie x

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Thanks Sophie. I am going to try and stop placing so much emphasis on the markers because so many of us have oncologists that don't check them. I am hoping to get in for scans next week so that I will know what the actual status of the tumors are. Then I will just have to go from there. One day at a time and one foot in front of the other.

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You're welcome, Kim. I hope all goes well with your scans next week.

Sophie

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just practice one day at a time as that's all any of us get anyway. I have to constantly remind myself of this. Yesterday is history, tomorrow a mystery, TODAY is the PRESENT! open it and rejoice! <3

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Oh Kim. You are amongst those who understand! I originally was diagnosed with stage 1 in 2000. Went through IV chemo, radiation & several surgeries. 15 years later cancer returned (was it ever really "gone"?). In 2015 Stage 4, mets to left lung. The bottom fell out of my world. I enjoyed almost 15 years thinking I was free and clear, ha! Following the stage IV diagnosis I was hospitalized twice, one for thoracic surgery and placement of chest tube, once for infection. I exhausted my FMLA an lost my job (a registered nurse), but really that was the least of my concerns. I wanted to focus on whatever I had to do to stay strong and LIVE.

In all honesty, I did not expect to do as well as I have done. I have been on Ibrance/Letrozole since February 2015. My tumor markers have fluctuated a little but not by a lot. A few years ago my oncologist suggested we no longer do quarterly CT scans and go to a 6 month schedule. I was terrified to go that long between scans! Seeing my reaction, she has kept me on the quarterly schedule. However, I recently agreed to change to six months. Im working on not letting the fear take over about this change. Truly, I cannot focus on that. I cannot focus on the cancer and that is very difficult to do! It has already robbed me of so much, my vigorously healthy lifestyle, our retirement plans, our financial stability we have worked for and planned for our entire life. I will not let this cancer infiltrate into and cast it's dark shadow over my day to day enjoyment of life.

I hope things settle for you. What you are feeling is very typical. There are many highs and lows with this disease. I try to focus on how I feel overall, not one test result. My doctor also told me that they look at tumor markers as one part of the whole picture. Knowing that I'm doing all I can I must let go and taking a day at a time ENJOY LIFE.

Namaste

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Sister3nkc, I can totally relate to this b@st@rd cancer upending our financial and retirement plans. I'm 65, I'm tired, but I don't know that I can afford my medications on social security and I don't want to blow through all my savings. This was supposed to be a time in life when you exhale and stargaze. My husband is now out of work, and honestly, at 60 I don't know that he'll ever be hired in a similar position. So I'm working on Plan B. But have to factor in the Cancer when I think about fleeing the East Coast. Besides causing emotional and physical turmoil, this cancer is so much work. So important to put it down and enjoy your life, whatever the situation. Happiness is now a choice, not a given.

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Oh Kim I know the feeling am in it now. My mri came in with mixed results— old ones healing but new ones have shown up. I have no clue which way to go now. I see radiation oncologist later to discuss. Then will have him call my oncologist. My head is spinning and I feel wiped out this week off ibrance.

Here’s hoping we get some good news 🙏🏻🙏🏻🙏🏻🙏🏻For healing. Hate this disease.

Love

Frances

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Last month was a tough Ibrance month for me too. Literally dragged myself through the month. No one knows like we do the real meaning of the phrase dragging yourself through the day. If you like your oncologist, put the details in his/her hands and let it go. This will get figured out. Find a space for yourself to relax your mind and body. Yoga? Meditation? Music? A special place?

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If you try yoga, try to find Hatha Yoga. It's free-flowing and not that up-and- down pretzel stuff. I do it thru an Emeritus program (55 and older) thru our local college. Very easy on the body and nice stretching.

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Yes, and there is actually a Yoga for Cancer. Not sure where it is offered, by I did it on vacation and bought the book.

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I did not know there was a Yoga for cancer. What is the name and author? I only have Yoga for Dummies! LOL

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Tari Prinster. Haha, yoga for dummies. I'm waiting for them to come out with "MBC for Dummies." Funded by Pfizer, our new normal!

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Lol

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Right On!!!

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Thanks for the recommendation. My library has the book so I will pick it up after the weekend. You have never led me astray....I meditate all the time now because of you and it really helps relax me. My oncologist gave me the name of a yoga instructor that specializes in people with bone mets and I'm seeing her next week. I am looking forward to those private sessions. With my bone mets I cannot lie flat on a mat and flexibility is out the window.

Sandra

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That is too funny!!! Love your sense of humor.

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Strangely I wouldn’t like that...I’d rather do normal yoga than yoga for cancer as it would remind me I was ‘different ‘

I know I’m weird..I won’t go to any cancer centres or places where people with cancer meet...upsets me

Barb xx

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I take a yoga class once a week and I believe its Hatha Yoga. Lot's of stretching. I really like it.

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I also take Ibrance, with mixed results. Some months, I have no side effects. Others are awful, complete with mouth sores, exhaustion, and bone pain. I get annoyed at those Ibrance commercials where the lovely, non-exhausted looking woman is attending her granddaughter's ballet recital and then having a sleepover with her? WHERE does she get the energy?? I want the Ibrance that SHE has! LOL!

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Like everything else in this society, it's all about marketing. How good can you get Cancer to look? The Ibrance commercials have managed to make the new normal look like an enviable lifestyle. Ha. I hate those commercials, they ruin my tv watching by making me have to think, "oh yeah, I have that..."

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Yes I hate those commercials. This is Susie's new normal blah blah blah!! If they only knew!!!

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They really give an unrealistic picture of what taking Ibrance really means.

I hate them!

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We don’t get advertisements in UK thank goodness..I’d be tempted to Chuck a brick through TV

Barb xx

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Hi Barb,

I haven't seen any in a while, but do you remember some of the Macmillan adverts? Like "A dad with cancer is still a dad" and so on. I have to turn the channel or mute the TV when I see those adverts.

Sophie x

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Yes I know that one

Very insensitive in my opinion

Barb xx

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Hi Barb,

I agree. I have found Macmillan to be really helpful whenever I have stopped by their information centre, but I hate the adverts. There's the one where the lady is having flashbacks to when she was having scans and treatment, and now she is in the present getting on with her life.

Sophie

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It has been a tough Ibra nce week for me too!

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You are in good company. Let's crawl out of the Ibrance ditch together and embrace the warmer weather.

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Sounds good to me!

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Sounds great. Meet you there💕

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Your degree of anxiety is exactly why some oncs don't use TMs at all! They can cause needless worry! Things besides cancer progression can cause a rise in markers. The numbers sound more precise than they are and some changes can be totally meaningless. If you have your blood pressure taken twice in a row, it is likely that the readings will vary a bit--same with TMs. I suspect that if we had a blood draw in the morning and then again five hours later, those TMs would probably vary somewhat! And sometimes when a new drug we are using for the cancer is working well, dying cancer cells rather than progressing cancer cells make the TM numbers rise--that is called "flare" and is actually a good thing not a bad thing. The oncs who do have TMs done generally use them just as an indicator to do scans. Kim, I'm a longer termer with mbc, 15 years, and my TMs were only in the normal range for a few months, and have been inching up for the last four or five years. They were most recently in the 300s but the CT and bone scan I just had within the last month were both clear. Early on, like maybe the first four or five years, I kept a record of what the CA 27-29 was but now I've let go of that and often don't even bother finding out what the latest reading is. I've gone fairly long periods without scans, too.

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Always learn great clinical info from your posts. Thanks! My doctor does them once in a while, but as you say, goes by scan results. I also only have scans once or maybe 2x a year. It used to freak me out, reading about how many other ladies are having them several times a year. I don't think I could handle that anyway.

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Although, I’m the last want to live in the dark, there is a big part of me that believes the less we know the better off we are. With that said, I am using research and staying on top of things. But many of the things that I stay on top of these days alternative and holistic ideas and practices. I have found some amazingly wonderful information on the truth about cancer online videos are quite outstanding on the doctors the day interview from all over the world are amazing. There was a new series it’s him out to share that because of being involved in organizing my son‘s wedding ,I have yet been able to listen to them although I purchased them. I’m getting to the point, that I had to go to my Oncologist because all it does is upset me and stressed me out. I think there’s a lot to be said about keeping our Emotions in a positive place as much as possible and I don’t know how we do that with all that we go through and all that the doctors are telling us on a regular basis. How old are you and where do you live?

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Well, knowing too much can cause you more anxiety, for sure. However, I also feel knowledge is power. I want to be well informed and understand what is happening. We are all different I guess.

The only problem I have with "The truth about cancer" series of videos is they are not free! Sorry, but many of us struggling with this disease also have very real financial troubles. If this was truly a benevolent film series devoted to educating people about cancer and giving us hope then why charge for it? There must be a better way to finance the cost of the films.

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I a thousand percent agree with you about knowledge. I am one of the more informed MBC people. But, I now only want to hear good news and no longer dwell on the negative. It is soooooy hard to do this but I do believe, after dealing with this disease for over 20 years that there is a tremendous benefit in keeping positive, keeping negative emotions at bay, laughing each day -even when nothing to laugh at and keeping as busy as possible with other things than cancer. My best friend of 50 years just died last week. It has been almost impossibly hard to deal with as I was also her medical directive (past Univ PA nursing and lifetime around medicine--not all positive) and with her much of each week and each day. She was a shining example of how to keep going dispite all odds. She had far worse medical problems than we do, multiplied to a ridiculuous degree. She should have been dead 20 years ago and kept going to an almost insane degree of energy. Partly, maybe largely, I believe she lasted so long because she never thought anything negative. She refused to believe that all of her daily bad medical news was actually going to kill her and she kept her schedule full of just about everything, including work at 75 years old--running the streets, literally for multiple hours a day. Stunning and an example to keep on keeping on with a positive attitude. Many times I thought why does she not look at the reality of her illness, and she was 75 lbs when she died. But, she did not and always had something to look forward to. So, there it is. Yes, I am like you but I want to be more like her.

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I am so sorry about your friend. She is an example for all of us. I also will not be weighed down by any negativity and lead a peaceful life taking a day at a time and enjoying every one of them.

Blessings !

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Yes, she had 5 primary cancers--not spread but primary! then kidney failure. She had to IV herself every night in order to stay alive as she was unable to nourish herself from a cancer surgery 20 years ago. She had 2 bags and one of her cancers was eating through her skin in LARGE ulcers, all over her body, which she had to get cut out every three weeks. AND it goes on and on. Never got her down. SERIOUSLY! Not sure how she did it but we all need to learn something here. She had no living family and except for me and my kids and lots of friends. AND she was never home!! She traveled even though she had to pack large volumes of IV fluids and poles to ship to where ever she was going for vacations. Go figure. WOW. She was a retired school councilor, with several degrees. Worked a job training men and women going into harms way, not sitting at a desk. I have a lot of nerve complaining, when I do, and once again hope I learn a lesson from this amazing woman.

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Omg! So sorry about your friend. She sounds like a wonderful, strong and inspiring person! God bless her.

I will try to think of her when I want to complain!

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Yep me too!!

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And you can get the truth about cancer frequently for free over a week at a time. I don;t know the schedules but it happens. I watched the first series for free.

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I think I caught one or 2 episodes for free, might have been a 60 minutes spot. Of course my interest was piqued so I went in search of more information feeling quite disappointed to find out it would cost me money.

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Im with you on that!! I did go ahead and buy the second series but I actually have not had time to watch as yet with my friend and my son't wedding this past weekend. I need to get back into my cancer health--not disease. It is a full time job, isn't it ladies!! I'll share what I can when I can.

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Oh Kim I'm so sorry you are so stressed. We all understand how tough this all is!

Sending peace and hugs to you!

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Thanks. Today is a better day. I am trying not to focus on the results and just wait for the scans and the results. I feel really good so I am hopeful that things are stable at a minimum.

Kim

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Kim,

So happy you are feeling less stressed. You seem much more positive and are smart to just wait for scan results. Breathe

Love,

Marianne

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Hi Kim, I get it. I have metastasized breast cancer, Stage 4. When I started chemo in

Dec, 2018, my markers were at 104. In Jan 2019, they had dropped to 96. Feb dropped to 64. March to 60. Now, at last week's labs, they were up to 62. My onco says not to worry, that they fluctuate....but I DO worry. So many have told me that their onco's don't even DO markers, so I guess maybe we should try to be calm. But, yes....it is SO hard. We want to live so badly. Please stay in touch and tell us how things are going. Peace.

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My oncologist sent me an email and told me to please not compare them to my last results. He is now practicing at another cancer center and he says that all labs perform the tests a little differently. I will go with what he says and hope for the best with the scans. Will keep you posted. Thanks for the response.

Kim

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I have no idea what tumour markers are. I have blood work to check my levels for my near cycle of Ibrance and I have ct scans every three months. The scans are what my oncologist uses to measure my cancer.

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Thank god for tumor marker testing! My scans were clear in 10/18 with no evidence of disease. Then 2 months ago my markers shot up 25 points. Scans showed mets to my liver and intrahepatic bile duct. I just completed a week of cyber knife radiation to my liver and have begun Verzenio and Faslodex. I had absolutely no symptoms that the cancer had progressed. I lead a pretty active life with a high energy level. Had it not been for the tumor marker test, I never would have known the cancer had become active again. My oncologist explained that cancer cells often mutate and find another source of energy to grow, so that's why my treatment plan has changed. Best of luck to you! There are so many new treatment options now, so if one fails, another one will be successful.

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Dear Kim So sorry you're feeling discouraged. I do believe you should wait until newest scan results are in, before

assuming bad news. I am curious what you are doing, besides conventional meds. I recentlly substituted green tea for

my daily decaf/coffee mix with organic honey and organic half and half . I also take a few raw apricot pits every other

day (bitter !); take 2 tabs of turkey tail mushrooms, a full dose of Carnivora, and 2 table spoons of liquid Graviola.

I notice that sun damaged skin on my upper lip seems to be fading (I've had it for years, assume it is pre cancerous),

and a forehead wart, that I've had for decades, and which sometimes seems show little blood vessels around its base, currently

is looking flat and white and inactive. I have faith that it is the Carnivora possibly. I am encouraged. My oncologist promises no

cure, but I have blind faith one of these supplements or one I shall next find and try, will cure me.

I relapse to eating sugar, but there will be days when I am strong and shun it . No perfection, yet. There are always days when we

have more will power than others We are human !!!

Let me know what you are doing "outside the box" so we can share notes. Good luck Don;t worry about markers, just yet.

Mary in Maine

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Thanks Mary. I have pretty much changed the way I eat and eat mostly plant based with a few animal proteins a week but only organic free range chicken or wild salmon. I try and keep these to 2-3 a week. I do take alot of supplments to help boost my immune system. I saw a naturopath and she recommended certain ones. I also take some essential oils internally - i do a combo of Frankincense, Copaiba and Oregano. I have changed out all of my skin care, cosmetics, laundry stuff and the cleaning supplies I use to clean non toxic formulas. I too try and stay away from sugar but every once in awhile I will splurge of a chocolate chip cookie - my weakness. I am curious about what you are taking. I have never heard of them. I also see an acupuncturist but mostly for my back and then she helps with stress.

Lets keep in touch.

Kim

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