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Afinitor/Aromasin

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Comments

  • nkb
    nkb Member Posts: 1,561
    edited November 2019

    weight loss is listed in the common side effects list. I know diabetics lose a lot of weight on my this drug. . I have not lost weight - blood sugar has remained normal. But, this week I have a tooth abscess and am off Afinitor and on antibiotics and the pounds are flying off. It’s odd because I am eating a lot of calories ( in smoothies) yet still every day weight islower. I am ok for now - but, wouldn’t want this to go on too much longer.

    The Ibrance lasted me 18 months and I was distraught when it stopped working. I would have made a deal with whoever to stay on it. I hope this works longer I don’t like my next options.

  • sbaaronson
    sbaaronson Member Posts: 121
    edited November 2019

    Hey Moomala,

    I am happy to wind up 2019, it’s been less than stellar. Of course, we are both still here - there is that!

    My MO thinks something may be irritating my Phrenetic Nerve, hence the hiccuping. Gee, I wonder what that might be?! I feel oddly calm on this eve before the CT.

    Shout to anyone else in the scan bandwagon this week!

    Stace

  • Moomala
    Moomala Member Posts: 397
    edited November 2019

    Hope your CT was uneventful Stacey! I have to do about 13 hours pre-meds for them because I'm allergic to the contrast. Good times. When will you hear from the MO?

  • cling
    cling Member Posts: 263
    edited November 2019

    Angie, I lost 13+ lbs since starting AA on 9/27/19. Had hard time to put back; so if I don’t lose any more, I am happy. I just start getting one mouth sore, and now get on the mouth wash every day. Skin is extremely dry and itching on neck, and inner part of elbow. It was so bad at night. Don’t know if anyone has the rash/itch problem? Oh, I have diabetes and my blood sugar went thru the roof! That’s the known SE of AA. However, the SEs I experienced as of now are much better than anticipated.

  • Moomala
    Moomala Member Posts: 397
    edited November 2019

    Hi Cling! Are you back from Hawaii yet? (from your envious friend Moomala)

    I'm at two weeks on A/A today and still doing pretty well. Fatigue a bit. A few bumps on my scalp. My biggest issue this week has been heartburn at night. Last night night I drank a little Kefir before bed and that really helped, but I was up with it again at about 1 AM and had to use a couple of Tums. Not horrible but a little more heartburn than I normal have. I haven't noticed any food taste problems this week and my appetite is great! Some vegetables and fruits are still a little off for me. Sorry you got a mouth sore! I am using that mouthwash daily too, although I can't wait for when I don't have to!

    What are you using on your skin? Is it reddened? I haven't gotten this SE (yet) but since I have skin allergies/eczema anyway I use Cerave twice daily and am constantly using hand cream.

    Today is labs, a check up with the NP and Zometa infusion. I'll be curious to see if I've lost more weight and how my blood sugar is going.

  • sbaaronson
    sbaaronson Member Posts: 121
    edited November 2019

    Hi Moomala-

    CT results stable or slightly smaller, disease noted was the few nodes in my supraclavicular and mediastinal regions. According to the CT, bone disease is all sclerotic. Still have to do the Bone Scan on Monday. If this is ok, at least I am stable for the moment! Still waiting to exhale...

    How about you?

    Best

    Stacey

  • Moomala
    Moomala Member Posts: 397
    edited November 2019

    Wonderful news Stacey!!!! I'm happy for you! They don't do CT and Bone scan the same day?

    My labs got alllll screwed up today. They were drawing for a study they are working on, and in that hubbub, the tech forgot to draw all my other labs. So, not knowing this, I went for the check up with the NP. An hour later waiting waiting waiting for Zometa. No labs. Finally the tech entered the infusion room and bam - she forgot to draw labs. So now I'm late for work and I still have to have labs but not enough time to do labs plus Zometa....blah blah. Labs were drawn and I'll go back for Zometa on Tuesday. No biggie.

    I talked with the NP today about a ton of stuff including a bunch of other patients who are on A/A. She had a lot of good things to say.

    I gained three pounds of the four I lost back. Thank you Halloween!

    MRI tomorrow.

  • nkb
    nkb Member Posts: 1,561
    edited November 2019

    actually- you reminded me that I did have scalp bumps the first month.

    My favorite cream so far for hands and feet is Weleda Original ultra rich skin food. On the rest of the body I use eucerin original healing lotion. It’s called lotion, but is quite rich and creamy

    About to finish 7 days of antibiotics and have the tooth surgery tomorrow- the pain have been demoralizing and he said it would rev up again after surgery - yikes.

    Congrats on stable scans!

  • sbaaronson
    sbaaronson Member Posts: 121
    edited November 2019

    I am having my bone scan done at the hospital where my first bone scan was done 9.5 years ago and where the scan was done 6 months ago. My doctor likes having it done on the same equipment.

    Ugh, sorry to hear about the lab snafu. A bit of a pain the ass having to go back...

    Glad to hear you were able to put on a little weight. I have been able to come back by a couple of pounds from my original 13 pound weight loss but it's not easy. I do better with breakfast and lunch in terms of appetite, so I really focus on getting the calories in then. I am in California, I often take a product called Releaf Capsules, 30:1 CBD - THC, the THC is so low it doesn't get me high, but it does help stimulate my appetite and I find the CBD does relax me.

    Hoping for a good bone scan on Monday and no med change! Aside from the on-going rash saga, I am really doing ok on the A/A combo.

    Good luck with your MRI tomorrow and have a lovely holiday weekend!

    Best,

    Stacey

  • sbaaronson
    sbaaronson Member Posts: 121
    edited November 2019

    NKB,

    Thanks for lotion tips! Between the dry skin and the on-going rash, I am SO ITCHY! This rash on my forearms has quite literally taken the pigment out of my skin, I am spotted from my elbows to my wrists.

    I hope you are tolerating the antibiotics well. I had an ear infection recently and the Augmentin they gave me was brutal. Best wishes for an easy surgery and quick recovery. I assume you have stocked the refrigerator with all things soft and yummy.

    This was the first scan that I got a status quo since this fun began almost a year and a half ago.Provided the bone scan is ok on Monday, I am going to give myself permission to exhale. The breath holding is exhausting!

    Take care-

    Stacey

  • masonsmawmaw
    masonsmawmaw Member Posts: 119
    edited November 2019

    So some of you also have issues with itching? I've been trying to figure out what was causing the uncontrollable, random itching that I have been experiencing! It's driving me bananas! What do you recommend specifically to deal with it? This is a picture of my arm....I guess my thin blood causes the redness/bruising, but this is a direct result of my scratching to relieve the itching Sad

    image

  • Moomala
    Moomala Member Posts: 397
    edited November 2019

    Angie that looks uncomfortable. I have lifelong eczema on my , scalp, neck and back so i am very used to not scratching but some times the itching is just toooo much. Not looking forward to this. I use Cerave cream. The dermatologist told me to buy the tub of cream, not the lotion. I use it before I towel off in the shower and I use it several times a day in itchy areas. I think she said Cetaphil cream was okay too. Also about soaps...I use Cetaphil soap but extremely sparingly on my body. I use a brush for washing so that I don't scrub and irritate my skin at all. Some days I do not use soap. I use one of those Norwex body cloths and water alone to wash.

    MRI went fine. Just interested to see the results.

    My first two week lab results came back. All numbers look really good including my Neutrophils which were 4.2 I was surprised by that number after two weeks on Afinitor. Just a month ago on Ibrance Neutrophils were 1.0. Glucose was 103. Creeping up but not bad and as I look back on the records it appears my glucose went up when I started Ibrance too. Platelets fell to 129 which is the lowest I've seen all year. Liver enzymes slightly elevated but they always have been since I was a young adult for some reason. Side effects on A/A waxing and waning on Day 15. I'd say the only two things I notice are more freqent heartburn and fatigue that starts to set in aobut 3-4 PM. A few scalp bumps. Nothing really slowing me down except back and hip pain.

  • nkb
    nkb Member Posts: 1,561
    edited November 2019

    Angie- that does look dry and uncomfortable. I remember SusanSF got a terrible rash on Piqray- she went to an oncology dermatologist who suggested the Zyrtec was better than other antihistamines for the drug related rashes. I use eucerin calming cream on arms and Weleda original ultra rich cream on hands and feet (it comes in light also so be careful what you choose- it is thick! I also do not shower daily- too drying. I only put soap on face, armpits, privates and feet- you are supposed to take cool, short showers- I don't do that . I have also heard that cetaphil to wash with and Cerave cream. Ice helps itching too. try to pat not scratch the itchy places.

    I had my tooth surgery today and am still numb- so pain free for the first time in 10 days. My ANC off Afinitor for a week and with a raging infection is 2.4- the highest it has been in years and neutrophils were 56%- this tells me that even though I am low usually, my body will respond against an infection! so like Ibrance, just pauses the cells, doesn't kill them like chemo. my tongue did start to burn- maybe due to the antibiotics, or being off the Afinitor- not sure- so I am alternating baking soda swishes with the steroid swishes and it is helping.

    I didn't even get heartburn pregnant with twins, so I can't help you there. I heard that it happens to many people on all sorts of these meds. My first labs were a little low also- my MO told me because my bone marrow was recovering (full of cancer) now all are normal- except ANC stays pretty low and WBC pretty low- not too low to have to stay of Afinitor which happened to me almost every cycle on Ibrance- even on 100 mg.

    Hoping for great scan results!

  • Moomala
    Moomala Member Posts: 397
    edited November 2019

    Stacey I hope your bone scan went well. That one is a long wait for the tracer to get through your body and then a long scan. Not a fan. Especially when they take extra pictures afterward. That always gets my brain going on overdrive. Hope you get great results on the scan. I haven't had a stable scan yet either and that is very disconcerting. I understand how you feel, so I'm glad that you got a nice stable CT.

    Interestingly I normally get the nuclear bone scan every 6 months but THIS time since my October CT scan was stable, and the new activity showed up on the nuclear bone scan only, I get to do CT and Nuclear bone scan again in January after just three months. But I'm honestly glad about this. Bring it. I had MRI of my low back Friday and waiting results on that. I know about the lesions but my back and hip have really been hurting when walking since September.

    Feeling well on week three of A/A. Still swishing four times daily. Still heartburn more than I'd like but it's mild and manageable. D seems to be resolved. Taste issues and weird taste in my mouth are resolved. Fatigue is mild. Couple of bruises and red spots on my arms, but I expect that becuase my platelets were a bit low.

    Zometa tomorrow.

    How's the tooth Nkb? Feeling better?

  • Leee
    Leee Member Posts: 115
    edited January 2020

    I’m on my 3rd week. Just had a week of awful mouth sores. Now have a rash (little bumps) that keeps spreading.

    Does this get any better?? Any tips and/or advice??

    Thanks!

    Lee

  • nkb
    nkb Member Posts: 1,561
    edited November 2019

    moomala-doing súper well with my tooth. So happy not to be in pain and to be able to eat more. Oatmeal smoothies with frozen blueberries were uninspiring. My tongue is better. I am going to restart the afinitor in a day or two. I am supposed to go to the lab and get all my regular labs, but, wondering if I should do the TMs - I am afraid that they will be sky high between the infection and being off the afinitor and if they are sky high I will be depressed even if they are inaccurate due the infection.

    Leee- I am sorry that you got the mouth sores- stay on the mouth wash for 2 months- 4 times per day. I got scalp bumps and various other minor rashes for a few months- nails got very brittle- am using sally Hanson hard as nails and they are better. I was tired for a month or two- no longer. I don’t know if I will have more issues when I restart having been off the afinitor for 10 days.

    I haven’t had a bone scan in years- I remember they were long and tiny machines so I probably took Ativan and willed myself to sleep during them.

  • sbaaronson
    sbaaronson Member Posts: 121
    edited November 2019

    Well Moomala,

    I have to say, I completely lost my shit during the bone scan and may now hold the record for the most f-bombs dropped during a single bone scan. It went on for so long... I just couldn't take it anymore! I don't remember it being so long and slow last time. Anyway, it's done now, hope to hear back Wednesday. I assume there may be some delay with the holiday.

    I have a lot of heartburn on this med. I have started doing 1 TBS of apple cider vinegar with 3 TBS warm water at night and it seems to be helping. I think the drug is messing with our stomach acid.

    I get the red bump rashes but they seem to disappear as quickly as they begin. My bigger issue is with the eczema type rash I get on my forearms. I am now managing it with steroid cream and CBD balm.

    How's your appetite? Hoping for good MRI results!

    Here's hoping we all end the year without any major setbacks!

    Stacey

  • Leee
    Leee Member Posts: 115
    edited January 2020

    There seems to be several mouth rinses. Which ones do you all use?

  • nkb
    nkb Member Posts: 1,561
    edited November 2019

    Moomala and I use Dexamethasone oral solution- I put a picture of it for you on the post dated November 4- go back one page and you can see it.
    how’s it going 50’s girl

  • Moomala
    Moomala Member Posts: 397
    edited November 2019

    Leee call your oncologist and get a prescription for that rinse right away. Here is the link to the Swish Trial report. Your MO should have given you a prescription for this with your Afinitor. There's no need for you to be suffering like this!!! I am in week three of the mouth rinse and Afinitor and I have not gotten a mouth sore! You poor dear! That has got to be so uncomfortable!

  • cling
    cling Member Posts: 263
    edited November 2019

    Nkb, glad your tooth pain is relieved. I have one molar starts getting minor pain occasionally. Afraid to do anything because I have been on monthly Xgeva for 5 years.

    Moomala, yes, I came back from Hawaii 10 days ago, it was a nice family trip to visit my son. The visit consists of visiting supermarkets and Home Depo, fixing house and yard and stock the refrigerator! What parents will usually do!

    Angie and Stacey, I have invisible/ quick disappearing rash that cause intense itching on arms, neck, back and scalp too. What kind of steroid cream are you using? I have tried Benadryl, Aveeno anti itch cream, Allegra, and Zyrtec with minor relief, and finally resort to use Tiger Balm. I probably should not use this folk remedy, but it did help for up to 8 hours

    Lee, ask your Mo to prescribe Dexamethasone mouth wash. You don’t have to suffer. The first bottle maybe free. My minor sores were quickly healed with this steroid mouth wash.

    Hope everyone is doing well on AA. It is not that bad with SEs as I read before starting this med.

  • 50sgirl
    50sgirl Member Posts: 2,071
    edited November 2019

    I have been following this thread, but I have not started the medications yet. Last week was spent waiting for the specialty pharmacy to process the pre-approvals from the insurance company. I had already been notified of the approvals, but you know how it goes. Both medications will be delivered tomorrow morning, then I will jump right in. I already have the mouthwash here, ready and waiting. I am still a bit nervous, but everyone here has eased my mind immensely. Thank you all for that. I will let you know how it goes.

    Hugs and prayers from, Lynne


  • masonsmawmaw
    masonsmawmaw Member Posts: 119
    edited November 2019

    For those of you suffering from heartburn....I have been on prescription Dexilant for years due to reflux/heartburn. In all these years, I have never had heartburn again! Just thought I would pass along.....


    Hope everyone has a great day!

    Angie

  • Moomala
    Moomala Member Posts: 397
    edited November 2019

    50sGirl, I started the swish the day before I started my meds. I don't know if it helped any but it I was really ready to get back on treatment and the swish was waiting there...

    I don't know if you noticed that I had to have the pharmacy order an additional prescription for Swish. They were prescribing 10mls of dexamethasone 3 times daily but the trial used a dosage of 10ml 4 times daily so that's what I've been doing.

  • sbaaronson
    sbaaronson Member Posts: 121
    edited November 2019

    Hi Cling,

    I am using a prescription cortisone cream. I try not use it as an everyday thing, I guess I am worried aboiut the steroid, must be hold over from the pre-stage 4 me. It's made by Fougera, and is called Hydrocortisone Cream, USP 2.5%. It really helps! My forearm rash literally pulled the pigment out of skin.

    Hope you are feeling well otherwise!

    Best

    Stacey

  • Moomala
    Moomala Member Posts: 397
    edited November 2019

    Good grief! Specialty pharmacy just called and said they find that four weeks of dexamethasone rinse is fine so they aren't giving me any more with my second month Afinitor next week. Luckily I think I have enough here to do three rinses a day for weeks four and five and then go down to two for the last three weeks. This is really annoying. I was hoping to have a bit on hand in case I needed it after I complete the eight week protocol.

  • nkb
    nkb Member Posts: 1,561
    edited November 2019

    moomala- that is rediculous! Do you have any recourse through your MO? I have used it a bit here and there - and the course of antibiotics starting a painful denuding ( like peeling) on my tongue even while off the afinitor- used the mouthwash and baking soda rinses in between. I am restarting the afinitor after being off for 2 weeks and am going to do the mouthwash again for a Week or so. This has to do with a pathway that the drug blocks, not with the medicine touching your tongue or anything. This is a generic, non addictive mouthwash-what is the problem? I did fight with my PharmD to get extra should I need it- she was reluctant- stupidity- I contacted my MO and it happened immediately.

    Good luck.

  • Moomala
    Moomala Member Posts: 397
    edited November 2019

    I will send MO a MyChart message I think. I've enough here to last me another three weeks if I'm careful. That will get me to six weeks. But I do not understand it at all - the trial was 40ml per day for 8 weeks and then could be continued at the patient/doctor discretion. I'm a bit angry that they are going by their own experience with the rinse. What's the big deal.

  • nkb
    nkb Member Posts: 1,561
    edited November 2019

    As I suspected, TMs went up a lot off the meds and with the infection. I demurred on having a PET and will do 4 weeks of Afinitor and recheck the TMs again. I knew it was silly to do them-

    Slight rain in draught ridden California- going to go out for a walk and enjoy it.

  • sbaaronson
    sbaaronson Member Posts: 121
    edited November 2019

    Moomala,

    The standard is 8 weeks. Please see link below, you can get 8 weeks for free through Novartis. If your insurance won't cover.

    https://www.us.afinitor.com/metastatic-breast-cancer/side-effects/management/

    Hope you are feeling well!

    stacey

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