worried about markers / possible treatment change

[LisaT23]

Hello again,,

MBC dx to bone and lymph 1/2016. Did Arimidex for almost 2 years, then faslodex/ibrance for 14/16 months. Last xgeva 12/18 due to ONJ (that story is in it's own post).

My markers have been inching up from 65 to 71 on the faslodex/ ibrance. PET on 5/4 came back "basically stable" no new lesions, some a little less active some slightly more active. It all looked good until markers came back on 5/18 they jumped from 72 to 97!!!!!!

Now my ONC wants to wait until 6/10 to draw them again. One week after last Ibrance pill and hold the next cycle of Ibrance( due to start 6/10) and the faslodex shot (due 6/5) until we get the markers back around 6/12 ??

If the markers go down I hope to stay on this combo longer. If they go up he might change my meds!!!! He mentioned a Ribocyclib trial but said I might not qualify. He also mentioned Affinitor/ Exemestane or farnestron??

If he had said to continue with the Ibrance/Faslodex I would not be as worried, but saying to hold on both scares me.

I have been with this ONC since my initial BC dx in 5/2003 and fully trust him, but he is now leaving my healthcare system at the end of June !!!! He says I can follow him, since we both worked for the same system my insurance covers best at our own hospitals. By leaving he would not be able to order treatments at our hospital where my insurance covers 100% with no out of pocket for treatments. I could still use him for consults (deductible and 10% co-insurance) which is OK (??) for visits but very expensive for treatments! He will not leave me "up in the air" and will even give me his cell. But I am getting nervous!

Lisa

[Red71]

I can understand being nervous about all these things going on at the same time! I would be too! Does your oncologist have someone in your current group that he would recommend so that you can stay with the system that your insurance covers? I would recommend doing that and seeing your current oncologist for occasional consults. That would be the least disruptive now and if it doesn’t work out you can always change later. None of those kind of decisions are set in stone. I don’t have any experience with other drugs so I’ll leave that up to someone else to comment. Elaine

[LisaT23 in reply to Red71]

Hi,

My ONC already recommended someone else in the practice, and I have a appointment scheduled for early July after my ONC leaves. He also said he would "direct my care". I can see him for visits, probably 150-250 per visit. I am not working anymore, and I am paying COBRA for my ins, so pricey but doable. I can get bloodwork, and tests done at my own hospital at no charge, and bring him the results.

But he would not be able to order treatments at my hospital, which is where he would need them ordered by a doctor still in our system, or it would be VERY expensive. At least for the next 19 moths, after that I will be eligible for medicare, and can choose a different insurance as a supplement.

I am also still healing from the surgery on my jaw due to ONJ. Surgeon removed a large piece of bone from my upper jaw. (see my post ONJ, zometa, xgeva. So I feel like I am getting hit from all sides.

Thanks,

Lisa

[Red71 in reply to LisaT23]

I would think that if your current oncologist wanted a specific test your new one would probably agree and go along with him. It’s hard, but try not to worry about events that haven’t happened yet and may never happen. As far as your markers, it seems like small changes in yours are indicative of changes in your cancer so you are probably right to be worried. Holding your Ibrance for a week until you get your test results back won’t really hurt and then you will know that what you are taking is the right thing. I’ll keep my fingers crossed that your markets went up due to some aberration in the test and not a real change! Let us know when you get your results.

[Terilyn12]

That is so frustrating!! The marker jump seems small ... when we found the Letrozole to have stopped being effective was when my markers went from the 300s to the 600s. If I could get under 100... that would be amazing. My will jump up or down sometimes 100 in a month

[LisaT23 in reply to Terilyn12]

Hi Terilyn,

Ny ONC says watching markers does not work for all. He has some PTs with normal marker that have wide-spread MBC. In my case when the markers increased to 50 in 11/16 we did a PET and found that I now had MBC. The markers dropped back to normal range on Arimidex for almost 2 years. When they started to rise again we found new bone mets and I was switched to Faslodex / Ibrance.

Now they rose again. I know that 97 seems like a low number compaired to people that have them in the thousands. It is just that percentage wise 71-97 is a big jump. They never did that before for me and that is the highest I have had them.

Thanks,

Lisa

[SoCalLady]

Hi Lisa, I agree with everything Red 71 said and also Terilyn12 with regard to the marker increase seemingly small. My markers have been going up 50 to 75 notches every three months, and my onc has not yet changed my regiment due to my additional expense and desire to find a trial to deter the cost. I would trade my markers for yours in a minute. I am already in love with your onc. He seems very devoted to you and your well-being. I think the reason he wants to wait before making any decisions is to look at your markers after your "rest" from Ibrance/Faslodex, before he makes a decision "one or the other is no longer working", particularly since your scan is stable. Even if your markers have not gone down, I would not be surprised if he kept you on your existing meds for another blood draw or two after 6/12 to be assured of possible progression.

I would be very interested in what Ribociclib Clinical Trial your onc mentioned possibly putting you on. Are you by chance in the New York area? Ribo has one going on to study the "Efficacy of Ribociclib after Progression of a CDK4/6 Inhibition" by using Ribociclib and Faslodex or just Faslodex alone (It's Trial #NCT02632045). I would love to be on this trial but I am nowhere close to that area. In case you're not aware, Ribociclib is very similiar to Ibrance, it's just a newer drug. I've been on it for 25 cycles now. The trial is open to Ibrance patients also, not just Ribociclib patients.

Regarding Affinitor/Exemestrane or Farnestron, I have no personal knowledge of these drugs other than Affinitor is an antineoplastic chemotherapy pill and is used following the failure of your existing regiment. I'm sure there are people on this site that are taking it and know more about it, however. You can also learn more about Afinitor at this site: chemocare.com/chemotherapy/drug-info.aspx But, don't even bother with it until and if you have a need to know.

I like that your onc is forward thinking with you in mind and will be available for you as a second opinion. Try not to be nervous, you are in very good hands.

[LisaT23 in reply to SoCalLady]

Hi SoCalLady,

That is the study my ONC is referring to:

Study of Efficacy of Ribociclib After Progression on CDK4/6 Inhibition in Patients With HR+ HER2- Advanced Breast Cancer

And that is my doctor listed there !!!!!! And yes I love him. I started with him in 5/2003 and he was one of the top 100 doctors in America for years !!!!! I wonder it he will take the study with him.

It looks like the problem is that I am already on fulvestrant with Ibrance, and already failed arimidex. It looks like the study is Fulvestrant with/without Ribocyclib. The very first exclusion "Prior selective estrogen receptor down-regulator use (SERD), including fulvestrant".

Thanks,

Lisa

[Barb5]

Hi Lisa I had the same thing happen to me. Different meds just when exmastane stopped working for me after 4 years my doctor that I fully trusted left she also said I could follow her but it was too far. Anyway the doctor that took her place was from Dana Farber in Boston I ended up liking him and trusting his decisions also. Neither one of drs ever discussed markers with me so I have no idea about them and kinda glad I don’t would just make worry. Good luck to you and hope you develop same relationship with new Dr.

[SoCalLady]

Is your onc Kevin Kalinsky?

[LisaT23]

Hi,

No, Dr Mark Hoffman listed at Monter Cancer Center.

Looks like the furthest site to the west is in Madison, Wisconsin. Not far enough west.

Lisa

[mariootsi]

Don't blame you for being worried. Alot changing f or you right now.

Maybe your onc can suggest another onc in your same facility so you are covered.

My original onc left too at my mbc dx and it really scared me but was able to switch to another onc who has turned out to be better in terms of communication and bed side manner. Just as qualified if not more as she is a researcher also.

I felt like the rug was pulled out from under me, but it has worked out.

I wish you well with all the changes. I know it is so difficult!

Love and hugs,

Marianne

[LisaT23 in reply to mariootsi]

Hi Marianne,

My ONC already recommended someone else in the practice, and I have a appointment scheduled for early July with the new doc after my ONC leaves. I told my nurse I wanted a good doc who was nice and would listen to me and this is the one recommended. The new DR also focuses on metastatic vs initial breast cancer. She is part of the same group, and both she and my current work together with the same "board" that the present cases to.

My current ONC also said he would "direct my care", he even said I could have his cell. I can see him for visits, probably 150-250 per visit. I am not working anymore, and I am paying COBRA for my ins, so pricey but doable. I can get bloodwork, and tests done at my own hospital at no charge, and bring him the results.

But he would not be able to order treatments at my hospital, which is where he would need them ordered by a doctor still in our system, or it would be VERY expensive. At least for the next 19 moths, after that I will be eligible for medicare, and can choose a different insurance as a supplement.

I am also still healing from the surgery on my jaw due to ONJ. Surgeon removed a large piece of bone from my upper jaw. (see my post ONJ, zometa, xgeva. So I feel like I am getting hit from all sides.

Thanks,

Lisa

[mariootsi in reply to LisaT23]

Sounds like everything will come together for you. I wish you a quick recovery from your surgery!

[Nmartinez15 in reply to LisaT23]

If u don't work anymore you can apply for Medicaid.

[LisaT23 in reply to Nmartinez15]

Hi Nmartinez15,

I have long term disability insurance, so I would not be eligible for medicaid. The problem is that I pay about $1000 a month for cobra to keep my old insurance.I worked for my health care system and they want us to use them for our care. I have very good coverage inside my health care system, no co-pay or deductible for tests or treatment ( authorization not needed) and low co-pay for visits. The highest co-pay for meds seems to be $10 if filled in our pharmacy, no charge if administered by our treatment centers or hospitals.

If I go outside my system I have a deductible and then a % co-insurance. This is not too bad for the doctor visits, worst case would be about $250 every 2-3 months. The problem would be the treatments which could get very expensive fast.

Since my ONC is leaving the system, he will no longer have privileges with-in it. He will be affiliated with a "rival" health care system.

Lisa

[Nmartinez15 in reply to LisaT23]

I have LTD insurance too. Are you sure you can't apply until you can get the Medicare? I called them when I apply bc the application online ask too many questions not related to the benefits of Medicaid. In that way you dont need to pay the 1000 monthly for cobra. I didnt keep my private insurance bc it was 1000 too. I was already in 100 % coverage, but I could not afford it. I applied over the phone and I gave them my pay stub from my LTD. It depends how much money you made with your spouse. Medicaid have paid everything with not deductible or co payment. For how long is your LTD? Mine could last 2 years but they approve monthly and there is not guaranteed it will last 2 year. I did applied for social security and I was approved. I am waiting for 6 months period to get it.

[LisaT23 in reply to Nmartinez15]

Hi,

The first 6 months I was covered by a short term disability insurance, and only had to pay what work would have deducted from my check for insurance which wasn't bad. After that LTD and social security kicked in. Depending on how much that is it is not taxable, so there is no taxable amount to subtract medical expenses from.

LTD depends on the insurance plan you have, and it could go to retirement age.

They promise an amount and deduct my social security from it and send me the balance (they would also deduct any other income). I am approved for the first 2 years LTD with 6 month follow-ups during that time (to make sure my condition did not change, as if it would just go away). After the first 2 years they re-evaluate if you are able to work.

This is "standard" insurance rules to make sure you are still unable to work, and applies to all illness and injury. Doesn't make sense for MBC but they have to follow their rules.

I would not be eligible for medicaid, and to get a cheaper medical insurance would cost me more in the long run.

Once I have received 24 monthly social security disability checks I will be eligible for medicare and can pick a great supplemental insurance for under 300 a month or less. I just have to get through the now to the then.

Since my MBC I try not to focus on what will happen that far from now, and concentrate on the now. I can't worry about things that far out.

Thanks,

Lisa

[Francesca10]

Lisa

You have a lot right now to deal with. Markers can jump from other causes and you are still healing from surgery. It will all work out- I know how nerve wracking this can all get. Your doc sounds great and your recent surgery may be a factor he is considering. My markers have steadily increased and only stabilized the last two months at 109. I know it’s worrisome but it’s the whole picture they look at, not just the markers. Try to rest and heal for right now. Sending hugs 🙏🏻🙏🏻🙏🏻

Love

Frances

[Kathyquilts]

I was told markers go up when cancer cells are dying off and entering the blood stream, as well as when there is a problem. This is why doctors don’t always get hung up on marker numbers. They prefer scans.

[Have-faith in reply to Kathyquilts]

Yes. I heard and experienced this when I was first put on Ibrance. My markers shot up - nearly doubled which freaked me out a little as no one warned me of this. Then my markers went down over the following weeks. I also read that if there is an increase of dead tumor debris markers can increase. Faith

[Have-faith]

Oh geez. Yes. You have a lot of balls in the air right now. Ypur concern, nerves are normal. The ladies have given you tons of great input. Infact, as I read all the comments I thought what a knowledgeable group. If I had found this site when my nightmare started I would not have bought all the books on this topic which I did ultimately buy. I could have saved myself a ton! I have learned so much from all of you. It does sound like you have a great onc who will steer you in the best direction.

Stay positive! Faith

[LisaT23]

Hello again,

So now my markers have gone up again ca 27-29 is now 108.8 on 6/10 from 97 on 5/18. My nurse called me Wednesday night, Onc wants me to get my faslodex shots and start the next cycle of ibrance asap, and get x-rays of my hip. This is the only spot that showed a slight increase, the sacrum and spine showed a decrease on the PET 5/4.

Thurs morning I called and got the center to squeeze me in for Friday morning, I will pick up my ibrance then.

Well, Onc called right after I booked everything. He said he was thinking about me all night. ( He is leaving at the end of the month,and a new Onc ( that he picked ) is taking me on. I had an appointment with the new Onc set for 7/5). He said to cancel my shots, not to restart the ibrance, and that he wants me to see the new Onc before he leaves so that they can discuss my care.

He just called me again, the x-rays are fine, just a very small spot on the hip. He squeezed me in for Monday 6/17 with the new Onc , he is still there for 2 more weeks, just not seeing PTs only finishing paperwork. He will try to come into my appointment, but will definitely talk with my new Onc after, before they decide if I stay on ibrance/faslodex or switch to something else. He thinks they both might even present my case to the tumor board again.

waiting,

Lisa