Afinitor & Exemestance now what?

[LisaT23]

Hi,

MBC Dx 12/15 bone & lymph, 2 years arimidex, 16 months faslodex & Ibrance, xgeva on and off through both.

I am on week 10 of Afinitor & Exemestance, markers(Ca 27-29) still going up each month (June 98- July 151- August 210 ). Had a cough week 2, chest x-ray 7/1 was clear. CT 7/18 all good. Pulmonologist said must be allergies/ cold. OK.

I never had a problem with blood sugar was always 86 - 112 without fasting, sometimes with M&Ms lol. On 8/19 my sugar went up to 337!! Re-checked it on 8/21 and it was 290! Onc put me on Metformin to deal with the blood sugar. She also left me a message that my lipids were high, "don't get scared", but did not say how high. We will re-check it Monday fasting.

I am also set for a PET scan on Friday at 7:15 am. Hoping my sugar will be low enough that they don't turn me away. I will be upset if I go without coffee (and everything else as prep) from 8am on Thursday, wake at 5am on Friday to have my son drive me only to be turned away. Techs always say that sugar needs to be low but since I was always under 100 when I had a PET, they never said how low.

My last PET in May showed no progression to old sites, but a very small new spot on hip. That is why I was switched to the Afinitor & Exemestance. But with these markers I am worried. If she decides to switch my meds I do not know what would be next.

Lisa

[beachlover65]

Hi Lisa! Try not to worry. There are more drugs to try. I need to switch again after 4 different combinations didn't work. My doctor is always positive and gave me a choice of 3 different more treatments to try. I will be starting Xeloda soon. I'm sure there will be more options for you. Try to stay positive and relaxed.

[LisaT23 in reply to beachlover65]

Hi,

What were the 4 you did?

I am just worried any new meds will have even worse side effects.

This is a new ONC for me, I have only been with her since early June. She is very sweet but can also be firm.

I had been with my old ONC since initial Dx of BC in 2003. He used to let me think I had choices, but always seemed to get his way saying "I am glad we are trying ..." as if he was taking it too. He would also say things like "I was up all night thinking about this and maybe we should try..."

Lisa

[beachlover65 in reply to LisaT23]

I first did ibrance and faslodex after my initial adriomyicin and cytoxin. Then it was femara and lupron, then affinitor and aromisin. Then I decided to go back to a more traditional chemo and did 22 rounds of taxol. I've also been on xgeva throughout all of this. Yes, the side effects are a worry. Taxol has caused me neuropathy. I am now putting a compound on my feet and hands 2 to 3 times a day to help with it. I am hoping Xeloda is not that nasty. I'm sorry about your blood sugar, but I'm sure that you will get help with it. Hang in there and stay in touch!

[mariootsi]

Lisa,

I know how difficult it is to stay positive and relax as I am very anxious too about what might be but I know there are so many options and only our onc can present them to us based on our individual profile.

[JBirdnut]

Did the Metformin bring down your blood sugar readings. Testing it beforehand with a BS test kit should let you know before going to PET scan.

Also, no other effects besides cough on Afinitor/Exemestan?

No skin rash on torso, swelling of lower legs and feet (all of which I had on 10mg Afinitor).

Doc suspended Afinitor treatment in mid July when the side effects became too scary and very painful. Only took it for 14 days!

Stayed on the Exemestane and the rash on my back and itching on face, ears and scalp got better, but still have it. Use oatmeal baths, peroxide on my back and Cera-Vi cream on my back, ears and face.

Fast forward to 8/22....doc stared me back on Afinitor, but 5mg instead of the "evil" 10mg.

So far, all good. No severe nausea, vomiting(ugh) diarrhea, extreme tiredness, swollen and painful legs, feet and ankles.

The neuropathy continues and I am getting some relief by receiving accupuncture. I noticed a marked difference on my toes. Still numb , but extreme pain and stiffness is gone and my spirits are higher.

Best wishes and hopes for all who read this blog.

Janine in Louisiana.

Diagnose with BC in mid 2014.

Diagnosed with MBC in mid 2017

[LisaT23]

Hi,

I am on 5 mg Afinitor, we tried 5 mg - 10 mg every other day but I couldn't handle it. She ordered 5mg 7.5 mg every other day, but my blood-work came back before I started the 7.5 so she said to wait. I just started the metformin on Thursday, and had blood work this morning. Hopefully the metformin works. She also said my lipids went high, but that was not fasting.Hopefully they are better today with fasting. She should call me tomorrow with the results.

With the 5mg I have extreme fatigue, diarrhea, nausea, dizziness, weakness. When I tried the 10 mg it was all worse and the omeprazole was not enough to stop the crazy nausea and vomiting, diarrhea was way worse too.

I was thinking of buying a cheap BS tester to use on Thursday. I can get one for $10-$20 but it only comes with 2-5 test strips. I thought about having the Dr write a script and going through insurance but the strips are still pricey and I would have to buy a pack of 50-100 at a time. Might be a little early to invest in that unless I stay on the afinitor. Guess the PET will determine that.

Lisa

[5280]

Dear Lisa T23

I was on Afinitor and it scared my lungs if you have any breathing problems its Afinitor I know we all respond differently just wanted to give you a heads up. Chrissy B

[SoCalLady]

Hi Lisa, how did your last Pet Scan go? Are you still on Afinitor & Exemestance?

[LisaT23]

Hi,

So the afinitor made my blood sugar go to 337, my triglycerides were over 1000, liver enzymes were up. Basically all my bloodwork was outside normal. Stopped the combo was sent to an endocrinologist who put me on insulin. I now have GAD antibodies which fight the insulin production in the pancreas, due to insult of the pancreas from the high blood sugar and cholesterol/ triglycerides.

Had to reschedule the PET twice because sugar was too high.

PET showed some new spots in the bone. Markers up to 251. Turns out the Afinitor and exemestance didn't even work for me.

My sugar levels are now in the normal range and triglycerides are down from over 1000 to 271 and still going down. Insulin lowered to 10 units, long lasting, at night. Was told it would take time, but that I will probably be stuck with the insulin. It is called LADA late onset autoimmune diabetes in adults. Dr said that she will check for the GAD antibodies again in a while, but they usually don't go away.

I am now on Xeloda just finished the 1st week this morning. Hopefully this will work.

Lisa