Afinitor : very tough side effects. Any1 else on this oral drug?

[JBirdnut]

Hello. I have been a contributor to Healthunlocked since 2017. Have had MBC (diagnosed) since late 2016

I have been through Ibrance which worked for 5 months. It got rid of a liver met which I will always be grateful for. However, bone Mets went crazy. So Onc put me back on infusion with Eribulin. You all know the drill....lost all hair within a month.

After over a year on Eribulin, my bone Mets are NOT LIGHTING UP! But the bad news was a thickening on both of my adrenal glands which was lighting up. They are neighboring the kidneys.

So, this brings me to Afinitor/ Exastimine combo. Oncologist switched to it in hopes it will take care of the growth on the adrenal glands.

It has made me so ill. Never had such awful side effects...even on Taxol infusions back in 2014( original diagnosis year).

Nausea to vomiting. Then that stopped, on to awful diahrrea which lasted way too long. Lost almost 10 lbs from loss of appetite.

Onc just says it is my body reacting(more like rebelling) to the new drug.

Now I have awful, large red bumps all over my legs. They are not blisters. Just looks like I have been kicked by a horse....several times! Very painful also. Along with those, is a very itchy rash on my torso, front and back.

Sure hope the Afinitor is doing it's job on the adrenals. Then it would be worth it.

Anyone out there on the Afinitor/Exastimine regiment? Would like to hear from you.

My oncologist only says that he is surprised I have no mouth sores. My side effects don't seem to interest him.

Janine in Folsom, Louisiana. St Tammany parish.

[4thTimesTheCharm]

Oh, JBirdnut! I’m so sorry for your experience! I’ve not had the same drugs you have but understand the dreadfulness of side effects.

GI reactions and hair loss, mouth sores and bone pain we all get with these drugs, but what you have looks like allergic reactions to me. Perhaps time for a second opinion- at least a second look by onc or primary.

I find that I sometimes diminish how bad things are when reporting to dr because I don’t want to be whining unnecessarily, but sometimes (like now!) ya’ just gotta make some noise!!!

Praying for your quick relief. kc

[JBirdnut in reply to 4thTimesTheCharm]

You are 100% correct..

I sent several of the photos to my doctor via Mychart last night. I insisted that the photos be shown to my doctor. I will follow up tomorrow (Monday). He has done so well by me, I think he may be a little baffled by my side effects.

I appreciate your input.

[JBirdnut in reply to 4thTimesTheCharm]

I got my Onc's attention with the photos. Said stop the Afinitor Exastimine now and for a while week.

[mariootsi in reply to JBirdnut]

Oh good! Glad you got his attention!

[Have-faith]

Hello. I have been on the same combo as you for a month as of today. I have been very fortunate. I sometimes feel very tired, but it can be work that causes this. I felt a little overly sensitive me tally the first week I was on this combo but I think I was upset I had to change regimes. This is my third line of defense since starting this nightmare Oct 31, 2017. I really hope it works for a long time. After 2 weeks on this my markers were checked. They had gone down 2 points. I wonder if you are having an allergic reaction? The spots on your legs look like a reaction of some sort. I think our bodies all acclimate differently and sometimes it takes some time. I wish you well.

Faith

[JBirdnut in reply to Have-faith]

Hello Faith. I surely hope your only side effect will be fatigue. That is hard to handle, especially if you are working every day.

The photos of my red spots were emslid to my oncologist. I think I finally got his full attention. He said to stop both drugs for a week. I will see the office PA on this Wednesday, so we shall see how I am doing at that point. This is my 4th change up on medications since this all started in 2014. Had almost 2 yrs of no problems till diagnosed with MBC.

Since the original Taxol, I have been on Ibrance, then Eribulin infusions and now Afinitor. I don't think my body is going to accept this drug. Hope the Onc has some magic in his pocket.

Thanks to you and 4th time is a charm for responding.

Best wishes.

Janine

[Have-faith in reply to JBirdnut]

Yes. Your onc will have another combo or plan for you. It is hard on many levels this whole journey. Part of it is that there is no one pill for all. We will all respond differently. It is a little like trial and error. I hope the spots have started subsiding since you stopped afinitor. We have to remember to pay attention to our feelings and if something doesn't feel right speak up. I am glad you got your onc's attention. Faith

[tessibop2002]

I have been on the same combo for 7 weeks, but I am only on 5mgs, my doctor said very few people can handle 10mgs, my main side effects are nausea and diarrhea, I take ginger caplets 500mgs for the nausea and Immodium for the diarrhea, ask your doctor to lower the dosage, you shouldn't have to go through hell!

[hdhonda]

Oh gosh, I hope it clears up soon. How is the flooding in Tammary Parish. The news reports are scary. Panama City is still trying to recover from Michael.

I am going to the Florida Board of Pharmacy meeting regarding drugs being shipped and stored at the correct temperatures August 5 and 6. I hope they will let me speak about my experience. My Ibrance was shipped in exceedingly hot conditions and it caused progression but has since been shipped correctly and tumors have all shrunk again.

I hope your side effects clear up so that you can continue with the chemo. Blessings Hannah

[Kimr2081]

I was on and a trial that include Affinitor and exemestine and one other drug that is similar to Ibrance. The affinitor gave me the worst headaches ever but that's it. It was the combo of all the drugs that kicked my ass!!!!!

[Iwngca]

I'm on day 5 of Afinitor after I was taken off Ibrance when it stopped working. So far, only side effects are really sore feet, some nausea, extreme fatigue, and on and off fevers. My worst fear was that it would make my blood sugar spike (I am diabetic and have been well controlled for over a decade) but it has not. But....just on day 5. Let's stay connected.

[Wolverine19]

Hi Janine, I am just going off ibrance after about 9 Cycles. I don't know what my next treatment will be until after I go to my appointment for genomics Clinic evaluation on January 2nd. FYI I have adrenal insufficiency from the metastasis spreading to my adrenal gland. This happened while I was on Anastrozole and just before I began taking ibrance. So your post has me wondering whether I will also be starting afinitor. I have heard mixed things about afinitor frankly the drug makes me a bit nervous oh, but we do it what we can and give it a try. Please let us know how it goes. I am praying the best for you.

[JBirdnut in reply to Wolverine19]

Hello Wolverine. Since my last post, I went back on Afinitor, but at a lower dose. No side effects, but onc took me off of it because it wasn't doing anything for the Adrenal gland growth. So, I am now on second round of Xeloda and Exemastane. Mets are not lighting up at all.... If we can get a hold of the adrenal gland growth, I will be stable.

The Xeloda dose I am on is 3 500mg and 1 150mg twice a day. Yes...a lot of pills! Exemastane is once a day, one pill. The only side effect from the Xeloda is acid reflux which is pretty bad. Can't take Nexium (which really works on acid reflux)because it contradicts the Xeloda. So, doing Tums and Pepcid AC, ginger snaps, baking soda in water and whatever else helps.

Let me know what plan your onc decides to put you on after the 1st on January.

Good luck,

Merry Christmas and a Healthy New Year

Birdnut

[Wolverine19]

Thank you bird nut, this is very good substantive information to have going forward and to discuss when they give me the results from my genomics evaluation. I half expect to be on the same treatment as you. It is very helpful to hear your treatment, and yes I will be posting the results of my genomics test. Enjoy the holiday and I hope Xeloda brings a positive outcome for you.

[JBirdnut in reply to Wolverine19]

Thank you. What symptoms do you have that proves adrenal insufficiency? I am dead tired by early afternoon, I don't get excited about seeing a special , rare or just extra beautiful bird anymore. Bursting into tears for absolutely no reason. I am afraid that these are all symptoms of the mbc that has taken over one of my adrenal glands.

Hoping for best results for you...much younger than me and you should have lots of good years ahead of you!