I need to be talked off the ledge that I am on and about to jump off of . At my three month scan everything was great my tumors were shrinking some not measurable so I continued with Ibrance and fulvestrant. At my six month scan one tumor shrunk even more some still were not measurable but one tumor increase from 2.0 to 2.4 cm my doctor still said that this was an improvement and that we should continue on but yesterday I got the results of my CA –15 results and I went from a 12.6 last month to a 13.5 this month and my alkalines in my blood test went up significantly to 126 Which of course has to do with my liver did I mention these tumors are in my liver sorry I know none of those results seem horrible on their own but when you put the three together I’m concerned that this is going to show progression….. i’m only nine months into this but I have myself pretty worked up and of course it’s the weekend so the doctors are not available to call.
Help?? : I need to be talked off the... - SHARE Metastatic ...
Help??
I’m so sorry you’re anxious. It’s an inevitable byproduct of our condition.
I recommend you listen to your doctor who’s trained and has seen lots of this. The “monkey chatter” in our heads is not what we should listen to.
Please, let your doctor know how concerned you are and leave a message. The doctor may find a way to convey this differently that eases your mind a bit.
My onc does not let my tumor markers drive her diagnosis. It’s a whole body thing with scans being the biggest part.
Eventually you will find coping tools to work for you. Sign up for counseling so you can vent. Get a med for anxiety. Go outside for 10 minute walks to get out of your head. Listen to a guided meditation. On line. There are free apps on your smart phone or on line.
One day at a time is the mantra I use. I don’t try to “borrow trouble” either as the saying goes.
We are here for you.
Thank you so much between you and Martha’sVineyard who replied before you I feel better already actually I know I just completely overreact to things never used to but this disease has done it to me! But you’re right positive thinking is what got me through it and will continue to get me through it plus you guys have always been so helpful thank you!!!! ❤️
I am an MD and I agree with the first 2 posts. Step back from the cliff and wait and see. Easy for me to say, but I've dealt with MBC for 6 years next month. 💕
Take care- step off the edge. You are doing great— try to focus on the positive and believe your onco. Your doctor has no reason to downplay anything she is seeing in reports.
Take a deep breath! Here we are for you!❤️
You guys have no idea how much you have helped me I feel so much better just talking to you that I think I’m gonna hold off talking to my doctor and see how I feel in the next couple of days I do have another scan coming up at the beginning of March so maybe I’ll just hold off but thank you so much like I said I feel so much better I try to talk to my husband about the stuff and I love him and he loves me but he just doesn’t understand I think it takes one to no one thank you !! ❤️❤️
I wanted to push the "like" button to signify that I commiserate with you but was afraid that you would take it wrongly; that I meant that I liked the situation you are in. I am commiserating and am sorry that you are so troubled by these vagaries of the numbers. Some times they are wrong and sometimes we interpret them incorrectly. We are told to ignore the unreliable CA numbers. If you are feeling physically okay, then I suggest in the absence of any doctors you take deep breaths or a drink. This cancer thing is so distressing because of all the unknowns.
Deep breaths. The increase in your tumor markers is negligible. It doesn't mean anything. If they were up 400 points, then you'd need to worry. But not this.
Hi Gibby21,
It seems that you are good at talking yourself into feeling anxious. My guess is that you would be equally good at talking yourself out of anxiety. If you find that you're not good at this, you could go for cognitive therapy, or supportive distractions .
I think that you need to remind yourself that you coped 12 years ago with early breast cancer, and now you are coping with its return. Do not allow yourself to obsess over "whatifs" (especially when your "whatifs' are based on limited knowledge). All of the points others have mentioned here are relevant, but will do you no good if you only continue to think about negative possibilities. Instead, be nice to yourself, plan to do something fun.
Warm wishes for your continued coping.
Hugs,
Cindy
You are wonderful Sandra. XXX ♥️
OMG Sandra, I admire your strength! How fortunate you are for never feeling anxious. How is it possible ?
I’m anxious almost everyday and can’t control it without medication:((
Such great advice from the ladies above that I don't really need to say anything except I hope you feel a lot less anxious now 😊
You’ve already been given such helpful comments from the lovely ladies on this forum.
I’ve also received lots of very helpful advice when needed since my diagnosis of MBC in May 2018. I definitely would not cope so well without this forum …
Unfortunately most of my friends & family just don’t get MBC & say the most upsetting things to me at times …. I almost wish they didn’t know! Yes, I get that I’m often feeling sensitive & they probably mean well BUT !!
Very best wishes.
Jo xx
Jo I totally understand what you say about friends and family not acknowledging MBC. Breast cancer is so widespread that almost everyone knows someone who's "had" it but not many who know someone with Stage 4. Therefore they just assume that we'll get over it and still be knocking around in 30 years time and if you try to explain then you feel like a harbinger of doom. If the conversation allows I try to drop in " I know I won't be an old lady" and then talk about all the good things I want to do with whatever is left. Fortunately the people who mean the most to me do understand and accept it which means we're not always talking about it and behave normally. Best wishes, Wendy
I have a therapist and life coach to help me with the mental and emotional aspect of having Cancer,it is the most important treatment during this journey with Cancer.It has helped me a great deal,along with support from my friends.I wanted to jump too but they have saved me.
I totally understand how you feel. The stress and anxiety
Talk to your onc. I truly think our minds are our worst enemy in this damn Rollercoaster. I have a psychologist I speak to weekly, but the negative, scary thoughts are always running around in my head. I struggle everyday to try to stop them and replace them with positive thoughts. It's a tough job. Try to breathe and fight those thoughts til you talk to your onc.
Sandra, as always sage advice. We are lucky to have you hear to put things into perspective. Thank you!
Gibby 21, Please step back from that ledge... My tumor marker numbers look like the Alps - up one month and then down. My onco does not depend on the tumor marker numbers - she says she doesn't think they are reliable indicators for me. I echo what Marthasvineyard says - please talk to your nurse navigator and ask for help. Our cancer center has social workers, etc who are available to help. I see a counselor as well who has helped tremendously and have a core group of "my people". May you find solutions - and remember each day we have is a great day.
I go thru what you go thru every three months (as probably others here), it can be a up and down roller coaster ride, we don't like it, it sucks at times. Hang in there, I agree with Marthasvineyard, its a part of having the condition we have. Learning to release it when it comes, is part of the solution; finding pleasant, ways to release stress. Different things work for different people. For me, praying asking God to help me release it, going for short walks, enjoying the wonderful outdoors, playing with my dogs, listening to music, checking in with a friend.
I understand your anxiety. Have you thought about calling a cancer helpline, am not sure where you are. In UK I've used Macmillan, and Bacup when I've been similarly anxious. Take care, I'm sure it's not so bad. Hope you can get some reassurance. X
Hi. I understand your worries. I'm 5 years into this journey and I've had months where my alkaline jumps from 48 to 96. At first, I would panic and go to the Mayo Clinic website, the Cleveland Clinic website, decide I have two months to live...then it would go back down. My tumor markers also spike up then go back down - probably from inflammation of some sort. I keep a spreadsheet where I record my bloodwork every month (since May 2016) and I've found it helpful to watch the numbers. When I have a spike, I scroll back and invariably find another one along the way. What the docs look for is trends, not single markers. If it's a consistent climb or a huge jump that stays up over several months, my doc would order scans - those are where the real information is.
It sounds like your oncologist has seen this before and therefore will know how to calm your fears. Don't be afraid to reach out and ask your questions. And we're here to help, too!
Sending big hugs,
Susan
I agree 100% and want to add to what you said about the size of tumors as measured by scans. Scans take pictures in "slices" and no two scans are likely to get exactly the same places in their pictures. Think of slicing a hard boiled egg--if eggs the same size were sliced by two different egg slicers, the slices are not likely to be in the same place on the egg and won't look exactly the same size. In making treatment recommendations, oncologists pay attention to (in order of importance) how re report feeling physically, scans and TM' s a very distant third.And to Gibby, none of us can predict our future but we never could! I'm a long timer--18 year anniversary of denovo MBC diagnosis in less than two months, and nobody could ever have guessed I'd still be here! In that time, I've had long slow periods of very minor progression but have never had symptoms from the "extensive" bone mets in my spine, pelvis, shoulder blade and a rib. I actually felt almost normal other than some tiredness, until about 18 months ago, but I still enjoy my family, our pets, and most of the things I've always enjoyed. I can do most of our laundry, paying the bills and all the boring stuff that goes along with that and probably about half of the grocery shopping. Oh, one of the best things I have done for myself was getting a second opinion early on from a respected bc specialist once at a Comprehensive Cancer Center, the top tier of CCs in the US, and went back after my first beloved onc retired. Now I have had some virtual appts with him, too. My new onc has gained my trust and respect by not rushing to change treatment. I hope you will do well like I, and many others have! ( dont worry about the scary sounding survival statistics as that is brought way down by people who aren't diagnosed until they are really really sick, those with highly aggressive treatment resistant (which you are not!) and those who for what ever reason can't or won't follow a treatment plan!
Once again the collective knowledge of the MBC ladies comes through! Stress is impossible to eliminate but can be managed and this site is a wonderful tool to help. I agree about tumor marker numbers. Mine have fluctuated too and my ONC takes it in stride. She uses them as one piece of the puzzle.
I know. But in my case when I stopped it I didn’t have that much withdrawal side effects. Anyway I have started again. How are you doing?
Yes I know:). I was diagnosed with celiac disease 4 months ago and since that my anxiety got worse so as all my doctors say that I have to start Lexapro,because the amount of stress and anxiety causes more damage to my health and my body won’t be able to heal. After my mom’s diagnose I developed iron deficiency and migraine,muscle pain,hand tingling pressure in my ears and in August I had colonoscopy and endoscopy,they were looking for something else but biopsy showed celiac. Apparently 40% of world population do have celiac genes but only 1% develop the disease throughout their life’s . Things like stress pregnancy can trigger genes to get active. I had no idea that celiac disease have 300 symptoms and most of them even not related to GI symptoms. I’m glad that I found out early . People usually have symptoms all their life and can’t be diagnose because doctors are not assuming celiac. I had migraine,my feet hurt,muscles,my neck. My skin became so dry. Most of them disappeared after GF diet. I’ve never had anemia in my life. All of the sudden I got iron deficiency. It also got better after gf diet. Doctor said my celiac is mild but it’s life changing and it’s not as easy as eating only gluten free. You have to be careful with cross contamination with all of the medications basically with everything,cause it might contain hidden gluten and lifelong gluten free diet or it will cause serious health conditions. Can’t eat outside or at my friends house. Anyhow I need time to adjust to new me and new lifestyle. And the worst part is explaining everyone that it’s not a joke. It’s an autoimmune disease,gluten damages my gut and small intestine and that why my body was not able to absorb nutritions and vitamins. People are making fun like common eat 1 slice of pizza or common a little gluten won’t hurt you. Or my friends calling me gluten free Saba. And the hardest part was dealing with my family. And you know me,apparently 93% of people respond to diet and get full remission and 7% not and eventually they develop life threatening diseases,and of course I think non stop of what if I’m in those 7%. Anyways,don’t want to bother you and other ladies here with my health issues. My mom has scan on 13th of January after 6 months. Hope the results will be stable
Am I NED??
Has anyone had success with Mebendazole?
Very low ER positive MBC
Good results from Verzenio
