change in meds to afinitor & exemestance

[LisaT23]

Hi again,

I was on ibrance & faslodex but the past 3 months my ca 27 29 markers have been climbing 71 to 97 to 109. My Onc is leaving my healthcare system and has set me up with a new Onc. They met before I was seen today, and decided to switch me to Afinitor 5mg and Exemestance 25 mg. My new Onc says that depending on how I do on the Afinitor 5mg, the dose might be increased to 10mg in the future. She will also give me a mouthwash to help avoid mouth sores.

Any idea what side effects I am in for?

getting nervous,

Lisa

[barbarac76]

Lisa, I was on the Afinitor/Exemestane combination for two years. I had mouth sores throughout. Keeping acidic and spicy foods out of my diet helped. The mouth wash should also help as a preventive measure.

I started at 5mg of Afinitor. WHen my oncologist increased the dose to 7.5mg after one month, I had extremely elevated liver enzymes and had to stop the Afinitor for several weeks. I stayed on 5mg for one year until there was slight progression in my lung nodules. At that point my oncologist increased my dose to 7.5mg gradually over the course of another year. Although the Afinitor worked great in keeping my cancer stable, I eventually had to stop because it was causing inflammation of my lung lining. My oncologist said it is very rare to tolerate 10mg.

I hope things go well for you.

[Have-faith in reply to barbarac76]

Hi there. Can you please share with us what was your next line of treatment when you stopped these too? Thank you.

[barbarac76 in reply to Have-faith]

My treatment history is:

1. Letrozole (Ibrance was not available in 2013)

2. Afinitor and Exemestane

3. Faslodex and Ibrance

4. Xeloda, which is an oral chemotherapy - I started in mid-February. Have had one PTscan since starting - good results.

[Have-faith in reply to barbarac76]

Interesting. I was put on faslodex and ibrance after letrozole and now I am on afinitor and exemestane. Glad you are doing well with xeloda. Anyside effects for you on this? Nice to know there are options.

[LisaT23 in reply to Have-faith]

Hi Have- Faith,

How long have you been on the Afinitor and Exemestane? What dose? What side effects did you get?

I will probably start this tomorrow, if it is ready for pick-up, and am getting nervous.

The idea of no more faslodex shots does make me happy. They hurt.

It also sounds like I won't need weekly bloodwork?

Thanks,

Lisa

[Have-faith in reply to LisaT23]

Hi Lisa. I am only 3 days ahead of you on starting this combo. So far, so good, but it maybe too early to have side effects, or hopefully I wont have any. It is normal to be concerned about side effects and results, but stay positive. This could be the combo which works best for us. It is a little trial and time. I usually see my onc every month for blood work. My next appt is in about 2 weeks time so I suppose seeing how I do at this appt will determine how often I see onc moving forward. Once a month is enough for me, but with a new med which can cause wonky liver counts and such onc may have me come back again in two weeks. As you see on this site there are several combos of treatments and we each have to find the best one for ourselves. Drink alot of water if you can. I believe this important, but it is a personal choice. Faith

[Have-faith in reply to LisaT23]

Oh and I agree no more butt shots is a GREAT thing. Boy oh boy those are unpleasant. Oh geez. Man this disease gives us all some pretty tough skin!

[LisaT23 in reply to Have-faith]

Did your Onc also give you the mouthwash to avoid mouth sores? Are you on 5mg also?

Some of the ladies on another site said they wrap the pill in a thin slice of marshmallow, so the pill doesn't touch their mouths, and they never got sores. I wonder if it really helps???

I am always a little worried starting a new med in case of a reaction. I usually want someone in the house with me. But if you didn't get any side effects early I guess I feel a little better.

Keep me posted,

Wish me luck,

Lisa

[Have-faith in reply to LisaT23]

Of course we all are wishing you and each other great success with the treatments! I understand your concern. It is all normal. I have not seen any mention of using the marshmallow technique to avoid sores. I think the sores have more to do with the med decreasing our neutrophils and WBC and other stuff, similar to chemo and as a result we may experience some mouth sores. It has something to do with the thin skin in our mouths and the fragility of cells in our mouths. When I went on ibrance I was so worried that I would be sick to my stomach that I bought a sea band to wear. It is a tight band you wear on your wrist at an acupressure point. I prepared myself for the worst outcome and I was fine. Yes. I got the mouthwash prescribed and I have been swishing it twice a day. And just incase I get a mouth sore at work I bought a mouth sore gel to make it less intense...should it happen. I did get a mouth sore or too on ibrance a few times...nothing major and they went away. They do go away! I figure if the worse thing that happens is a sore or two I am doing pretty well. You will be ok! Keep us posted. We will want to hear how well you are doing. Faith

[Barbteeth in reply to Have-faith]

I used sea bands after my radiotherapy ...they certainly worked for me..nausea disappeared

Barb xx

[LisaT23 in reply to barbarac76]

Hi Barbarac76,

I will probably start tomorrow as long as the scripts are ready for pick-up. Is there anything I should look out for?

Thanks,

Lisa

[Mermicorn]

I've been on this regimen for 2 months now. I'm on 10 mg. Be sure to use the mouthwash. My tongue always feels weird, like it has a coating and spicy things just don't cut it anymore. Lately I'll get nauseous every so often. It usually passes. And of course the fatigue. Hope it works well for you.

[LisaT23 in reply to Mermicorn]

I hate when thibgs don't taste right. That's why I let my son take me out for dinner Monday, and went for lunch with my mom today. My son even got me hot wings yesterday. It will probably be a long time until I can have them again.

I was given omeprazole, for reflux/nausea while on ibrance and it helped a lot. Onc said I can take it with Afinitor, hope it works with this as well.

Thanks,

Lisa

[mariootsi in reply to LisaT23]

I have worn sea bands since my initial dx. They work very well for nausea

[Have-faith in reply to Mermicorn]

Think of using a sea band. Not toxic for upset stomach. I have used it. I never get sick to my stomach. Look on line. It is used by pregnant woman and for sea sickness.

[LisaT23 in reply to Have-faith]

Hi,

Day 3 so far so good. But that mouth wash is disgusting, makes me gag. Do we really need to use it forever, or just the 8 weeks. 4 time a day is alot.

Lisa

[Have-faith in reply to LisaT23]

Hi. My onc suggested using it three times a day - to prevent sores. Her point was not wait until I had a sore. Tomorrow is my 8th day on this drug regime. I have only been using the mouthwash once or twice a day. Mornings and a few nights. I am not carrying the bottle to work so no rinses during the day. So far I am doing fine although I do feel very tired, but it could be my work as it has been a bit crazy lately. How so you feel? Faith

[LisaT23 in reply to Have-faith]

Hi,

I have only taken both afinitor and exemestance for 3 days so far. The mouthwash 4 times a day, it makes me gag.

Otherwise I am tired, 2 hour nap each day. I seem to get a headache about an hour or so after the pills, which leads to the naps. After that I feel better, and OK in the morning before I take the pills. Probably from the exemestance, I used to get a headache from arimidex in the beginning (not so often after a while) and after each faslodex shot. Hoping that my body gets used to it soon. My stomach gets a little upset, but so far not too bad.

The bottle of extemestance says to take it 1/2 hour after food, so I have been taking them after lunch.

When do you think is the best time to take them?

Lisa

[Have-faith in reply to LisaT23]

I have been taking both of my pills in the evening after a light dinner. If the afinitor is making me tired I rather have it at night. I also drink a lot of water. Directions do say take Afinitor with a glass of water. Faith

[LisaT23 in reply to Have-faith]

Hi Faith,

How are you doing? My mouth is very dry lately, thirsty all the time, melon is my best friend. Hope that isn't the start of something.

Lisa

[Have-faith in reply to LisaT23]

Oh yes. I noticed the thirstiness too! So drink a lot of water. It cant hurt. I am doing well so far. No sores and I have not been doing the rinse. How are you doing in regards to sores? I do feel more tired then usual.

Faith

[LisaT23 in reply to Have-faith]

Hi,

no sores but so thirsty and mouth always seems so dry. Drinking tons of water, way more than normal. I seem to down any water I start to drink but still want more. Melon helps a little, it's all water. The rinse helps also, seems I got used to the taste.

I take my meds at lunch still, need a nap about an hour later to avoid a headache and this stupid fatigue. I get at least 8 hours sleep a night, and a 2 hour nap. like a baby, can't function without it.

I stopped working a year ago, it was too much. Some days I don't even feel up to going upstairs for laundry. I was hoping for more energy with the switch.

Today was day 8 for me, so maybe it will get better?

How are you otherwise? They say to watch for coughs also. Have you had any blood-work yet? I will get the 1st on day 15.

Lisa

[Have-faith in reply to LisaT23]

Hi Lisa. Thank you for sharing with me so we can compare notes! Crazy with the thirstiness. Maybe it creates a form of dry mouth and not that we are dehydrated, but I think drinking a lot of water helps our liver flush out the toxins and also being well hydrated is supposed to help with fatigue. Hopefully we adjust to the meds so we feel stronger. I ha e been taken squirts of Liquid B12 if I feel foggy. Seems to give me a boost. Taking a walk may help you feel better AFTER the walk! I know that getting the energy to do an activity is a challenge, but I do feel better after I have done the activity. We can be grateful we dont have the sores. First blood work for me since starting this will be July 1. It will be my 15th day on this regime. Enjoy your day. Try to focus on something else! Faith

[LisaT23 in reply to Have-faith]

Hi Have- Faith,

How are you doing? Did you get your blood work done yet? Today will be day 13 for me so I will get my blood draw tomorrow.

Spoke with my Onc yesterday and told her I was starting to get a cough. Well she heard the cough and sent me for a chest x-ray yesterday afternoon. I should hear from her this morning with the results. I tried to get the tech to tell me if she saw anything but she said she was not a Dr and couldn't say. She let me look at the image, but I don't know what to look for. LOL.

Lisa

[Have-faith in reply to LisaT23]

Oh sorry to hear about the cough. Hmmm... let's hope it is just allergies or something unrelated to the meds or other things we are dealing with. You should know soon enough and when you do find out please let us know. I had my follow up yesterday. The blood work that came back - all except tumor markers which take longer- all looked good. Even white cells and neutraphils are all in the good zone. Doc says afinitor doesn't effect white cell count like ibrance can. I mentioned the thirstiness and she said she doesnt hear this one often from afinitor but did say that often when our hormones are messed with a thirstiness appears, especially if the thyroid is involved. She warned me that sometimes there can be a flare up on tm when starting a new drug so we will have to see. I will keep you posted. I hope your cough is nothing serious.

What State are you in? I am in NY.

Faith

[LisaT23 in reply to Have-faith]

Hi,

I am on Long Island. Where in NY are you?

Onc said that the X ray came back clear, so it might just be a cold (or too early). Never hoped for a cold before LOL. I now have her permission to take robitussin. She said to call her if I get a fever or it gets worse to call her and she will order a CT.

I get my blood work tomorrow, but I like to get it done a few blocks from home rather than drive in to her office. Just means it takes a day for her to see results, since Thursday is the 4th, she will call me on Friday. Just CBC (counts) and MBC (metabolic) , she will wait until I see her at the end of the month for markers. She said 2 weeks on new meds is usually too early for markers, so this way I won't worry.

I have only seen her once and spoke on the phone twice, but I like her. My old Onc just left Friday.

Lisa

[Sebina]

Lisa, good luck with the new medication! I hope it is going to work for you for long time!

I'm not on Afinotor but I once had a mouth sore and my holistic doctor recommended Oraltide Pro Peptide Mouthwash and helped me so much!

Sebina!

[LisaT23 in reply to Sebina]

Hi Sebina,

Thanks. My Onc gave me a mouthwash to use 4 times a day to hopefully prevent or reduce mouth sores. It's dexamethasone?? A steroid mouthwash. Hope it works. My mouth doesn't hurt but it is very dry the past couple days.

What treatment are you on? I have been on Arimidex then Ibrance/Faslodex with Xgeva before this.

Lisa

[Sebina in reply to LisaT23]

I'm on Xeloda (Chemo pills) for last 3 months w/Xgeva every 3 months!

have had one PET scan since starting with good results 😊

[LisaT23 in reply to Sebina]

Hi Sebina,

Good results is the best! Celebrate it.

How do you feel on the Xeloda? Side effects?

I was on Xgeva but has ONJ so had to stop. Oral surgeon removed a 3.2 x 2.6 x 1.1cm bone and tissue from top jaw, last tooth and behind. It is healing well. Onc says when it is fully healed I might go back on it.

Lisa

[Pbura]

LisaT23, 3 months is too less time to check of the response of ibrance & faslodex. It could be tumor flare,where you might see an increase tumor markers and even slight progression. I would suggest getting a 2nd option before changing the medication.

[LisaT23 in reply to Pbura]

Hi,

I was on Faslodex for 16 months and Ibrance for 14 months. The last 3 months of this markers went up, and PET showed an increase in activity on hip, with other lesions stable. That was my 2nd line of treatment (1st was Arimidex for 2 years). Figured we got a good run with the Ibrance and Faslodex, and I had a lot of side effects from them. Onc said that if only 1 or 2 of these (markers increasing, increase activity on hip, side effects) were true she would have tried rads on the hip and offered to continue the meds.

Instead switched to Afinitor and Exemestance. Day 13 today, so far I feel a little better than on the Ibrance/Faslodex. Guess we will see.

Lisa