Afinitor and it’s side effects

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Tracy011760
Tracy011760 Member Posts: 3
edited April 2020 in Stage IV/Metastatic Breast Cancer ONLY

Is there anyone on Afinitor 10 mg and if so how long and side effects experienced

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  • Nkb
    Nkb Member Posts: 1,436
    edited September 2019

    Tracy- there is as afinitor topic you can read. It is a quiet topic, but, several of us are on afinitor. I have been on 10 mg for 7 months and doing well. The first few months I had fatigue. I got a few weird rashes the first month also- all went away without treatment. I did do the dexamethasone mouth wash 4 times per day for 2 months as recommended and had no mouth sores. I over all have fewer side effects than with the Ibrance and way more hair.
    people with diabetes tend to have a tougher time on this drug with weight loss and out of control sugars. My blood sugar has edged up, still normal. Cholesterol has edged up also and ANC is still low. My anemia is pretty much resolved and the rest of my labs are Normal. Feel free to PM me if you have any specific questions.
    when are you starting?

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  • Law828
    Law828 Member Posts: 33
    edited September 2019

    Ibrance stopped working so I have been on Afinitor for almost a month. My sugar levels hav always been a little on the high side (about 105). I am now averaging about 250 and has gone up to 588. I have cut back on eating carbs to help but it doesn't seem to make a difference. Iam on metformin 500 mg and I have doubled it to 1000. I see my doctor next week. I have not had any mouth sores and just a little tired. I hope afinitor is working. Oh, I take 2 pills of 5mg each (total 10 mg

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  • Cure-ious
    Cure-ious Member Posts: 2,626
    edited September 2019

    I am happy to see a revived Affinitor thread, because the role of these drugs has been so unclear in the post-Ibrance world. Fantastic to see that you are already at seven months and going strong, NKB!!! I hope others who have tried AA after I-F will weigh in. As with Piqray, nighttime fasting and/or Metformin/good blood sugar control will make these drugs more effective on their targets. My hair is total straw, so I'm thrilled to see that the SEs are now more readily managed, and perhaps by comparison with other targeted drugs, the AA combo will in retrospect not seem so bad!!!

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  • Nkb
    Nkb Member Posts: 1,436
    edited September 2019

    Law828- the blood sugar issue seems to be a big problem for people with both the afinitor and the piqray. I know that SusanSF was able to control her blood sugar on piqray with a fairly strict diet- but she didn’t have blood sugar issues before the drug. I hope that the blood sugars get better soon! The metformin could help with efficacy also.

    Thanks Cure-ious! I think that now that the mouth sore issue is well controlled with the 8 weeks of prevention more MOs are going back to trying it.

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  • Tracy011760
    Tracy011760 Member Posts: 3
    edited September 2019

    Hi! I am currently on 7.5 mg of Afinitor and my doctor just increased it to 10 mg. He told me that some women just can’t handle the 10 mg. I have skin issues and fatigue now. I start the 10 mg next week

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  • Nkb
    Nkb Member Posts: 1,436
    edited September 2019

    Tracy- did your MO want to increase the dose to get you on as high a dose as you could tolerate or another reason?

    How long have you been on afinitor? Can you fill in your treatment and diagnosis fields and make them public- then they show up on the bottom of your posts and make it easier to figure out what is going on.

    My fatigue and rashes are much better now. I do notice that the fatigue is worse ifI am sitting around vs doing stuff.

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  • Tracy011760
    Tracy011760 Member Posts: 3
    edited September 2019

    I’m wondering if anyone on Afinitor has any issue with their fingernails. Mine are horrid. If you do, have you found anything that’s helps??

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  • Nkb
    Nkb Member Posts: 1,436
    edited October 2019

    Tracy- what issues are you having with your nails? I go to a salon for my toenails and have them painted. My fingernails split fairly easily so have recently resorted to painting them with a clear polish to strengthen them, and I keep them short or they catch on things. None have fallen off.


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  • sbaaronson
    sbaaronson Member Posts: 230
    edited October 2019

    Hi All,

    I am on month 5 of the A/A combo (10mg). All in all, I feel pretty good and am much less fatigued than on I/F. It was just last month (month 4 on A/A) that we saw my tumor markers finally move downward, it wasn't a big drop by any means, but the first I have seen for some time. I still get the occasional mouth sore and have developed an interesting rash on both forearms, but my hair, skin, and nails seem fine. My September blood draw was very close to normal, although my blood sugar is hovering at just below pre-diabetic and my cholesterol has risen to burger-eating truck driver levels. I am a lifelong athlete and vegetarian, always had very low cholesterol prior to this. I am taking Metformin 2x a day as well as a plethora of supplements, some days I feel 99% like my old self.

    I am happy to see some new discussion on this protocol!


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  • Nkb
    Nkb Member Posts: 1,436
    edited October 2019

    hello all- well, I just got my blood work back ( not TMs yet) and for the first time in 4 years I am not anemic! I do feel much better when Iexercise. My blood sugar is normal, but, cholesterol is skyrocketing!! Total cholesterol up to 265! LDL is 165. Trig is normal still and HDL is quite good still. Will meet with my MO later this week, I doubt she will want to treat the cholesterol and I wonder if it is as dangerous and high cholesterol not caused by a drug effect?

    How is everyone else?

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  • sbaaronson
    sbaaronson Member Posts: 230
    edited October 2019

    NKB,

    My cholesterol was 240 last month! I saw my oncology nurse practitioner today for blood work and TM, no results yet but my CBC seems to be holding stable. I asked about the cholesterol and she told me there is nothing they are going to do about it now?! I assume high cholesterol is high cholesterol no matter what the cause... I wonder if exercise mitigates some of the damage it causes. I am still running and doing my regular routine, hoping that it will help my physical health, it sure does help keep me sane through this... Hoping for good blood work results and TM's on Monday!

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  • Nkb
    Nkb Member Posts: 1,436
    edited October 2019

    I just talked to my cardiologist friend and he said short term high cholesterol isn’t worrisome.

    How is your blood sugar?

    Hope both our TMs are good!

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  • sbaaronson
    sbaaronson Member Posts: 230
    edited October 2019

    HI NKB,

    Isn't that a quagmire?! Short term the cholesterol isn't an issue yet we want the drug to work as long as possible against the cancer... My blood sugar is hovering just below pre-diabetic in the normal range but I am taking Metformin. I asked my oncologist to put me on it as the only cancer I have in family is also where diabetes seems to be prevalent, just playing a hunch. I never had high blood sugar. I am trying to watch my carbs but I would have to say I am not that good at it. Here's to good TM numbers! Will let you know how it goes. Enjoy the weekend, beautiful weather here in SoCal.

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  • sbaaronson
    sbaaronson Member Posts: 230
    edited October 2019

    Hi Nkb,

    Aside from red and white counts outside the normal range, the rest of my full panel looks good. Tumor markers have risen a smidge since last month, they feel like this indicates stable. We are going to wait and see how they look in 30 days and scan if they have risen. All this aside, apart from my the icky rash on my forearms, I am feeling well. A bit of psychological blow having the markers rise. Trying to regroup and get on with it...

    Hope you have fared better!

    -Stacey

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  • Nkb
    Nkb Member Posts: 1,436
    edited October 2019

    SBaaronson-my TMs went up as well! But, not too much and my MO says that she is not worried about it yet. My TMs fluctuated a lot while I was on Ibrance. I feel really good, so I am hoping that it will work for quite awhile. I am going to go into denial until next month, but, I did wish for lower or same on the TMs

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  • sbaaronson
    sbaaronson Member Posts: 230
    edited October 2019

    Nkb,

    I am going to join you in denial until next month! Here's to a great 30-day reprieve!

    Take care,

    Stacey

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  • masonsmawmaw
    masonsmawmaw Member Posts: 134
    edited October 2019

    This month marks a full year on Affinitor 5mg. Scans at the end of this month. Praying for good results as I feel pretty darn good!

    Wishing all of you the best...

    Angie

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  • Nkb
    Nkb Member Posts: 1,436
    edited October 2019

    masonsmawmaw- thinking of you for good scans at the end of the month!
    Glad we feel good- makes denial work!

    Nanci

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  • ledascout
    ledascout Member Posts: 17
    edited March 2020

    Hello friends,

    I just started Afinitor + Flasodex after almost a year on chemo (which did almost nothing for me), and I'm feeling so good I'm just praying it can hold this cancer back for a long time! I have extensive liver mets, although liver is still functioning very well.

    I am a little concerned about the cholesterol thing as it seems to be a real issue! My baseline is very good (as is blood sugar). We'll see where we are in a month!

    I am also wondering how effective Afinitor has been for folks.

    Thanks for any thoughts!

    Leda

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  • sbaaronson
    sbaaronson Member Posts: 230
    edited March 2020

    Hi Ledascout,

    I have been on Afinitor and Aromasin for almost a year. It took a solid 6 months to see any real reduction in tumor markers but the last 3 months they have been dropping significantly. My scans have been stable or improved. I am due for another in May.

    My disease is in a few spots on my bones and a couple of lymph nodes. They removed the tumor in my lung when they found the cancer had come back after 8 years.

    I didn’t do well on Ibrance/Faslodex. The AA protocol has been fairly easy for me. I get tired sometimes and have had the mouth sores, rashes, and higher cholesterol. I went on Metformin when I noticed my blood sugar was just below pre-diabetic.

    I wish you luck on the drug!

    Best,

    Stacey

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  • ledascout
    ledascout Member Posts: 17
    edited March 2020

    Thanks Stacy! This is helpful. And best of luck for May scans. :)

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  • WorkingMom10
    WorkingMom10 Member Posts: 72
    edited April 2020

    I've been on afinitor and aromas in since August of last year. So far I have been doing well. I had mouth sores for the first 2 months but none after that. My main side effect has been high blood pressure which my primary care doctor is treating. My tumor markers got down to 6 but increase to 13 this month. Really hoping that trend doesn't continue. Has anyone else had tumor markers increase while on this medicine? My next set of scans are in May. Thanks!

    Christine

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  • Moomala
    Moomala Member Posts: 436
    edited April 2020

    Hi WorkingMom10 - It's hard to tell too much from TMs. In fact when I had a 2nd opinion at Dana Farber Cancer Institute the MO there told me they don't even do them. Hopefully you are getting TMs every month. I've been on Afinitor/Aromasin since October and the first month my TMs went up. Then they dropped quite a bit. Now they're dropping more slowly. So many things can contribute to TMs. It's hard to wait for the scans, especially now. I'm supposed to have mine in May too, but becuase of covid19 a lot of peoples' scans are getting pushed out further here. Good luck and it's great that you are done with mouth sores. I think I've cycled through every side effect in the package insert and still having SE's to this day. Most recent is loss of appetite and weight loss. Just had a dose reduction and it's done wonders. Good luck!

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  • sbaaronson
    sbaaronson Member Posts: 230
    edited April 2020

    Hi All,

    After 3 months of dropping TM's my CEA shot up 5 points and my 15.3 went up 19. Blood work still looks good. I am having a little shortness of breath. It's very subtle and does not stop me from exercising but there is definitely something different. Scheduled for a PET on Tuesday, it's been 5 months since my last CT/Bone Scan and 11 months since my last PET. Time to get a look inside and see where we are. Hoping that this is just a blip and I can stay on the A/A protocol. It's been really tolerable for me. I am one month short of a year into A/A.

    Fingers crossed. I am feeling well and focusing on that. I want to feel well for as long as possible.

    Stacey


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  • Moomala
    Moomala Member Posts: 436
    edited April 2020

    Fingers crossed Stacey! My CEA went up 5 points this month too. I am waiting for CA27.29 to come back. My alk phos (indicator of bone activity) has risen sharply over the last two months. I'm so bummed. I had a stable PET scan in February and TMs were dropping. Then we lowered dosage to 7.5 to work with that awful fatigue and diarrhea. Now everything is going up. MO said the dosage drop is NOT the issue, but it's a big coincidence.

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  • sbaaronson
    sbaaronson Member Posts: 230
    edited April 2020

    Hi Moomala,

    I guess shame on me. After 3 months of having my 27.29 and 15.3 drop, and the CEA inch up, I guess I expected another drop. I was stunned to see my CEA leap up so much in a single month. I feel pretty well with the exception of this slight breathing thing. In any event, it's bad if the Afinitor is causing lung issues, and it's bad if the cancer is causing lung issues. My blood work really does look ok, no red herrings. I am still waiting on the 27.29 results, they haven't come through yet.

    Moomala, that's a fishy coincidence.

    Bummed is putting it mildly! I would like to have a meltdown but I am waiting to see if it's a really big one or just a blip. When I get my PET results,I will let you know.

    Be well!

    Stacey

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  • sbaaronson
    sbaaronson Member Posts: 230
    edited April 2020

    Moomala,

    My 27.29 is up too. Looks like there’s some fun on the horizon. Will let you know after my PET on Tuesday.


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  • Moomala
    Moomala Member Posts: 436
    edited April 2020

    Stacey yup my CA27.29 was up - just got the results back this morning. Sigh. My scans are next month but I'm guessing my MO is going to move them up now. I'm so bummed - it took me months to get my body used to this drug and I'm finally feeling pretty good on it. Ugh Ugh Ugh. MO will be thrilled because she has been wanting me to go on Piqray. I'm not so thrilled about the idea of Piqray.

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  • sbaaronson
    sbaaronson Member Posts: 230
    edited April 2020

    Hi Moomala,

    Well, we seem to be in the same boat. Let’s compare MO conversations and scans. I suppose Piqray is the next rung on the ladder? I am really struggling with the depression today...

    Stacey

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  • Moomala
    Moomala Member Posts: 436
    edited April 2020

    ohhhh Stacey me too. We lost a member of our support group yesterday. Today I lost a piano student Then those TMs. Just thinking about Piqray is scary. And we’re cooped up. Here it’s a sunny day but it’s too chilly out really. I did a quick indoor walk w Leslie sansone. Doing some PT now. I’m so skinny now most of my clothing doesn’t fit me. I was very surprised when I looked in the mirror. There’s a lot to feel down about. I hope tomorrow is better

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