Slight increase in tumor marker

[Lap68]

I started Ibrance and Letrozole last month and did great. Tumor marker seemed to come down from 70 to 58, but I had always taken my multivitamin and double dose of B complex which I learned you shouldn’t take before tumor marker bloodwork because it can show the marker to be lower than it actually is. So this time I didn’t take any supplements prior to the bloodwork and my tumor marker is 68. I freaked out because I just don’t want the Ibrance and Letrozole to not be working after 1 month. Did anyone ever experience fluctuating tumor markers throughout treatment or does it mean the cancer is progressing? My doctor said it does not mean that with just one occurrence especially since I stopped my supplements, but I’m still worried.

[Hidden]

Hi Lap68...

I, too, pay close attention to my tumor markers and other indicators on the lab reports. So I know what you mean about being concerned about an increase...BUT, I'll mention that tumor markers often increase, sometimes dramatically, after beginning a new SUCCESSFUL treatment as the tumor "sheds" (or similar) as it withers away! So I would focus on what might be a positive sign here...

Take care,

Lynn

[Lap68 in reply to Hidden]

Lynn, you made my night!

I was diagnosed with lobular MBC in October, 2019 after 6 months of complaining of liver pain. I literally told my doctor and 3 GI physicians that my liver hurt as my liver enzymes and ferritin kept climbing. I was misdiagnosed 5 times until my stomach blew up with 7 pounds of fluid that needed to be drained. I went from irritable bowel to stage 4 MBC and admitted to the hospital. Mets to liver, bones and orbit of eyes. I see double when I look hard left. I work for a reputable hospital so this was just unreal.

I started on chemo (taxol) because of the liver situation. My breast onc is awesome and she wanted to hit it hard. I did so well on taxol other than being totally hairless and my finger and toenails oozing and wanting to fall off. I was on it 6 mos and my doctor thought it was time to switch treatment since my labs improved drastically and scans were greatly improved or stable. I did great first month on Ibrance and Letrozole and was expecting the same this month. My labs were awesome. White count, platelets, neutrophils and red count all in normal range this month. I was celebrating until the tumor marker increased. I am going to definitely go with your explanation. I just can’t believe a treatment would only last one month after responding so well.

My sister has been following everyone on this forum and has been telling me your stories to keep my spirits up. I’ve been too afraid I guess to read for myself until this morning. I am learning a lot from you all and I am finding comfort from you all. THANK YOU for being there. It means so much to have women to bond with who are living with this.

Lisa

[NShaft in reply to Lap68]

My tumor markers go up and down every month. This month it was 44, last month 40, and the month before that 47. I have been on Ibrance and Letrozole since Feb 2019. My Onc says he looks more for a trend than actual numbers. He depends more on scans and how I feel to determine progress or lack of it. One month on Ibrance is really too soon to know if it is working or not. It is so hard not to focus on the numbers though!

[Lap68 in reply to NShaft]

Hi NShaft,

Thank you for sharing your experience with this. I am so happy that I joined this group of warriors. The support and understanding is priceless. It is so hard not to focus on numbers and I almost wish I didn’t know them every visit. The anxiety I get is unbearable. I have to learn how to better deal with this. One minute I am ok and trust in the Lord and the next I’m freaking out. It’s going to wear me down really quick. You all have already helped me immensely. THANK YOU!

Sending blessings your way!

Lisa

[NShaft in reply to Lap68]

Having said all of the above I still get anxious every month. It comes with the territory I think. I try to be kind to myself around appointment time and know I will likely be even more exhausted after.

[bubblystream]

Hi Lap68

Your tumor markers are already very low by my standards. When my mets was discovered I was in the 800's for one of them and 600's for the other. In about 6 to 9 months the Ibrance brought me down to normal. I am increasing now into the 60's and 110 for the other. But my dr says same as yours. He lets scans have last word. My scans show my cancer is inactive. All sorts of things can affect tumor markers my dr tells me. Unless they shoot up by doubling etc, he shrugs his shoulders at them. I have been on Ibrance for 4.5 years and I am now 66 years old. I think your markers are nothing to worry about.

Pam

[Lap68 in reply to bubblystream]

Hi Pam. Oh thank you for the insight. It sure helps when your mind starts running into overdrive. Any ache or pain now brings on more anxiety. When I was diagnosed my tumor marker was 187. I had mets to liver, bones and orbit of eyes. Six months of Taxol brought it down to 70 and then I started the Ibrance. This is only my second month and the first went so smoothly. I’d just hate to have to change so quickly. I want it to work.

[Lap68 in reply to Lap68]

I wasn’t done darn it. I want to thank you for your reply and support. This is such a great group of women. I wish none of us had to in this group but I am glad to have others who understand. Thank you and God bless!

Lisa

[Mindysooty]

Hi Lap68, I'm at Weston Park Hospital in UK who haven't used tumor markers for about 10 years so my Onc tells me. I've read on here many times that they can go up and down without it really meaning anything in respect of progression/regression so I wouldn't worry too much about it (I know, easier said than done though).

Take care. Josie x

[Lap68 in reply to Mindysooty]

Thank you, Josie! I’m in Jacksonville, Florida. I love learning about how other countries or regions do things. We can learn from each other. Thank you and God bless!

Lisa

[Snallygaster]

My Oncologist told me that tumors will shed markers when the treatment is first started and is working. They also will shed if it is not working. BUT in 3 months the markers should go down if the treatment is working.

Also, the best indicator of a treatments being successful is the scans.

So hang in there and try to stay positive. I have to remind myself daily to think of how much better I feel and how I can do things now that I couldn't or didn't feel good enough to do two years ago.

[Lap68 in reply to Snallygaster]

Thank you! I know they are keeping a close eye. I appreciate it! Take care.

Lisa

[Lap68]

Thank you, Sandra! I actually take Centrum for women 50+ and the Bioton is 500% AND I take 2 super B complex vitamins with another 200% Biotin. So before bloodwork I was taking 700% the recommended daily allowance of Biotin. I finally read the small print in my instructions saying not to take any biotin before my labs so this was the one time I didn’t take any supplements or vitamins. I was hoping that’s why the TM increased or just because of lab variance. It does say that biotin can give you a lower reading so my many labs prior we’re done with the water biotin in my system.

This is all just so nerve-racking. I try to stay positive but sometimes I feel like I’m on a roller coaster ride, especially with the hormones. I get the electric shocks all over my head and arms and then the hot flash and sweat comes which I can live with but it’s just an indicator that my mood is probably all over the place.

Thank you for your wonderful post! I wish you all the best and know we’ll be talking more.

Lisa x

[Teddielottie]

Wishing you well as you continue on your second Ibrance / Letrozole cycle and hope you get many many more !

I wouldn’t worry about the slight change in tumour markers , it is probably due to your taking biotin . I would stop the biotin a couple of days before your bloods are taken each month . Also tumour markers are not the most reliable indicator , and many oncologists go on ct / other scans and how you are feeling , eg., any new pain etc. My onc did look at my markers initially , but they never changed and remained low , she said I probably have marker negative disease .

It is good that your bloods were within normal range for Ibrance too and I hope this continues for you . I have taken Ibrance / Letrozole for 31 cycles and tolerated it well so far . I wish the same for you . x

[Lap68 in reply to Teddielottie]

Thank you! I hope Ibrance works for me. I’m so happy to learn you have done so well on Ibrance. Ibrance seemed to do very well the first month with decent labs and lower tumor marker and no side effects. This month labs were even better but tumor marker rose as I mentioned. I thought it was strange my labs are pretty good when I am reading it seems to be more normal for low leukocytes and neutrophils. Mine are lower than when I’m not on Ibrance but they are in the low normal range at the lab draw taken 2 weeks into the Ibrance. Have your labs been good like this?

Strange- I worry when things are bad and I worry when things are good.

Thanks!

Lisa x

[Lap68]

Hi Sandra. My Centrum has 150mcg of Bioton but it says it’s 500% of the recommended daily allowance. Then I take 2 B complex supplements at 30mcg each. That bottle says 30mcg is recommended daily allowance. So I’m taking 210mcg which is 7 times the recommended daily allowance. Not too terrible. I did it for my nails and energy. Chemo destroyed my nails but almost back to normal. I’ll hold the Biotin the morning of my labs next Tuesday. I appreciate you looking into it for me. It was very helpful.

Take care!

Lisa

[viennagirl]

I just had some more scans and I will know more about my markers when I meet with my oncologist in about 10 days. But my markers went originally from 24 to 4 and back up to 42 so I don't know at this time what the fluctuations mean. Some doctors don't pay much attention to them or so I am told by one of the doctors I saw. I will try to get back to you when I know more about my markers and what they mean. Don't worry too much. I know we all worry but it probably doesn't help. Just keep doing good things to help build up your immune system. Hugs Marlene

[Lap68 in reply to viennagirl]

Thank you, Marlene! Please do let me know how you are doing and what you find.

All the best and many blessings sent your way.

Lisa

[SeattleMom]

Hi, Lap!

I had the same thing happen to me at one point during this past year; and I am now 2 years and 7 months since initial MBC diagnosis. Three months later, the markers were at lowest Ievel ever. I would not be too concerned at this point, particularly since you have just begun a new regimen. Markers tend to fluctuate and it's sometimes difficult to determine why. I am on your same regimen: Ibrance 100mg and Letrozole.

God bless you; you are in my heart and prayers!!

Love to you, Linda XXOO

[Lap68 in reply to SeattleMom]

Thank you, Linda! I am staying positive and do feel very well so praying the meds are working. Thank you for the prayers and I am adding you to my prayer list!

Many blessings,

Lisa ❤️

[SeattleMom in reply to Lap68]

💗🙏🏻💗

[PrHy]

I had breast cancer in 84. It ca.e back matasized in the bones. Markers start to rise. They added Ibrance to letroze. I am so upset.