Afinitor and diabetes and other questions.

[Iwngca]

My metastatic breast cancer has not responded well to Ibrance, Faslodex, and Xgeva. My wbc count tanked/cancer markers soared. She wants to move me to afinitor and aromasin. I am diabetic and worry that the afinitor will mess with my blood sugar. Anyone have any experience with this? Also, as always, I am terrified of the cost. I am lucky, have good insurance, but meds are so costly! My Ibrance was free. Can anyone who has been on these drugs tell me their experience on them? Mouth sores? Rashes?

[MacroMom]

In addition to replies you get today, I suggest you use the "Search HealthUnlocked" bar at the top and search "Afinitor" for past posts. There is so much helpful information about dosing and side effects. Ibrance/Faslodex didn't work for me either...low WBC and neutrophils, high CA15-3 markers. Afinitor/Aromasin was one of the options offered to me, but I went with Xeloda in the hope that it would be more effective on liver mets. If Afinitor is a problem with diabetes you might ask your oncologist about Xeloda. Regarding Xgeva, I have a shot every other month for extensive bone mets. I haven't stopped it when I changed other treatments, and don't think of it as having an effect on cancer markers. Does your onc want you to stop that too?

One other suggestion...when I had a second opinion last month at Dana Farber, the onc said they always do scans before changing treatments, so they have a good baseline to track its effectiveness. You mentioned markers but if you haven't had a scan recently you may want to ask about that too.

Changing treatments is hard. We are lucky to have so many treatment options but the decision-making isn't easy! I find it helpful not to rush, to get a second or third opinion, and to wait until I really understand my options and how to prevent/treat side effects. I hope you get some good advice here and feel supported in this transition.

[LisaT23]

Hi Iwngca,

I am on day 9 of Afinitor/ extemestance (generic for Aromasin) and was given a mouthwash (dexamethasone). I just switched from Ibrance/ Faslodex. So far ok. Still very fatigued, stomach is still iffy (maybe a little better??) I find I am very thirsty. I will get blood work on day 15, so will see how my counts are then. Markers a month after that, Onc wants me on this combo 5 weeks before checking them.

So far it seems a little better than the Ibrance/ faslodex. At least no more butt shots. I was on Xgeva but had to stop due to ONJ. Oral surgeon removed a large piece of bone. Once it is fully healed ONC said I will probably go back on Xgeva. Oral surgeon said He will be the one who will clear me, but does not have a problem with me going back on it in the future.

As far as costs, if you have private insurance (not medicare/medicaid) the drug company offers a co-pay card just like Ibrance did. They even offer a coupon for a free 8 week trial of the mouthwash, just make sure the doctor writs a script for the full 8 weeks, it is a one time coupon and will only cover one fill. The generic for Aromasin is covered by my insurance with a low 3 month copay, but Aromasin also has a co-pay card for the brand.

All 3 links are below.

Hope this helps,

Lisa

hcp.novartis.com/products/a...

hcp.novartis.com/products/a...

aromasin.com/savings

[Iwngca in reply to LisaT23]

Have you checked your blood sugar? One of the first signs of diabetes is extreme thirst. And raised blood sugars are on the list of side effects.

[LisaT23 in reply to Iwngca]

Hi,

Today is day 12, blood work it tomorrow. So we will see.

It's more like "dry mouth" ??

Lisa

[Iwngca in reply to LisaT23]

I have heard that dry mouth is also a side effect. SO many side effects. I hope that you are doing well on it. I spoke to a nurse today when I went in to get my port flushed and she said that she has several patients who are doing well on afinitor. Yet, the women in my support group say otherwise. It is hard to know what to expect. I am hoping SO HARD that I am in the group who does well on it. Best to you.

[LisaT23 in reply to Iwngca]

Hi,

Day 14 on Afinitor & Exemestance (Aromisin) so far so good. I am using the mouthwash at least 4 times a day and no sign of mouth sores. I am wondering if it is the mouth wash giving me dry mouth making me so thirsty. Seems the only time I am not reaching for more water is if I hold water in my mouth. LOL.

I was talking to my Onc on the phone on Monday and she heard me cough. Told her my Mom had just had a cold, and I have had worse coughs, but she sent me for an X-ray. She said it came back clear, maybe it is just a cold, since I was getting blood-work today and she will call me on Friday anyway, I have her permission to take roitussin. If I get a fever or it gets worse she will order a CT then. She is really on top of how I am doing.

My Onc that I was with since 2003 just left my healthcare system 6/28, and I was transfered to this Onc. I think I will be happy with her. I was worried.

You said you were on metformin for years. That might prevent these meds from messing with your blood sugar anyway. When my Onc was listing side effects she said that is what she would add if my sugars went high. She said that was easier to keep in check than the cancer.

I am on omeprazole (since the Ibrance) for my stomach. I had stopped when I started this combo, but just started it again nad it works for this too.

You said that you knew someone that got angioedema (swelled up like a blow fish ). How long was she on Afinitor before that happened. Is it an immediate reaction?

I hate starting new meds and worrying about what to look for.

Did you check out the links I sent about the co-pay cards?

Lisa

[Iwngca in reply to LisaT23]

Hi Lisa,

I am SO glad that things are going well for you. And it sounds like you have an incredible oncologist. I am not as happy with mine. She seems scattered and way too busy. And she has never called me. Her nurses do that. I have been on Metformin for about 15 years. It works well for me. I have not had side effects and as long as I am careful with carbs, no high blood sugar problems. The person I knew who had edema was in my support group. She only lasted 13 days on afinitor and aromasin. Her left foot and both hands swelled up hugely. She also ended up with a problem in her lungs, so had to go off of it. She was in the hospital for nearly two weeks. I think she is the reason that I am so terrified to go on these meds. I don't start until we get back from vacation on July 16th. It sounds as though you are doing well, though. I think it is like most meds. Some do well on them, others do not. When I went on Ibrance, I was so delighted because several women in my group have been on it for over 4 years! I only lasted 5 months. Everyone is different. I sincerely hope things keep going well for you. I do hate living this way, though. I feel as if a sword of Damocles is hanging over my head all of the time. Others are better at just letting go and living. I tend to be a worrier.

[LisaT23 in reply to Iwngca]

Enjoy your vacation, and try not to worry.

Lisa

[Felish48]

Ibrance/Letrozole did not work well for me either. In fact i stopped taking it 5/31 and my cbc is still low as a result of that medication. I went to do labs today and my wbc was a 7 but my red blood count is 2.27 and 2 weeks ago it was a 2.64. My hemoglobin went from 9.2 to 8.2 my platelets are 115 . Yet they want me to start chemotherapy on Tuesday. I'm not starting anything until they address my red blood count, the chemo will take it down even lower and it's already low, so what do you think will happen if my counts are low to begin with and I start something that compromises my counts even more..? I'm going to follow my instincts when it comes to my health.

[Iwngca]

I always think it is good to follow your gut feelings. Cancer is just so....canny. What works for one person does not work for another, etc. When I went on Ibrance, I was EXCITED. Almost every woman in my support group that was on it, had been on it for over a year with little side effects. Not me. I made it 5 months before my wbc tanked and cancer markers spiked. Then, my oncologist tells me that she'd like to put me on an IV drug called Halaven, but that my insurance (BCBS) won't cover it until I try at least two other drugs. She wants to put me on Aromasin and Affiniton. I have diabetes that has been perfectly controlled for over 2 decades and one of Affiniton's side effects is that it raises blood sugar. I don't want to risk that. Plus, I have seen several women in my group who went on this drug and had TERRIBLE side effects. One swelled up like a blowfish. The other missed many sessions because of puking/sick stomach. But...who knows? Maybe I will be the odd one that it works for. I didn't get to talk to my oncologist much because after the first 4 minutes, she was called away by an emergency and NEVER CAME BACK. We waited 40 mins and then my spouse went to check and the nurses were shocked that we were still there. Turns out that my oncologist forgot about us and went on to her next appt and then to lunch! I did speak to the nurses and a pharmacist at the specialty pharm and they said that blood sugar rises were "not common." Yet....if you go to the reviewer responses on the website, it is VERY common. I am confused and my spouse is furious, wants me to get a second opinion. I am inclined to try this combo and if it spikes my sugars, try something else. I admit to being just so tired of all the doctor visits, labs, biopsies. I feel so poked and prodded. Sorry to vent.

[needabreakfromcancer]

I'm curious. Are you by any chance on Metformin? I have only done two rounds of Ibrance, but my numbers went way up. My oncologist wants me to try another round. Because of the encouraging reports on Metformin, and because I was diagnosed over 40 years ago as a borderline diabetic, I called my primary physician to get the Metformin. i am really hopeful that it may help.

[Iwngca]

I have been on Metformin for over a decade and it has worked beautifully for me. I do eat carefully, really limit my carbs, etc. I have been well controlled for the entire time that I have been on this drug and had no side effects at all. Good luck!

[needabreakfromcancer]

Are you on Metformin? I am a borderline diabetic and just started on it a little over a week ago. I hope to get on a trial where they are using it with antibiotics. Are you aware of that trial? I got the Metformin from my primary doctor. Please let me know. I am really curious as to if you are on it. I have read that they think there is a connection between diabetes and cancer.