Afinitor/Aromasin
Comments
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Hi Mariol & All,
I'm also from Dublin but living in Kildare. This is also my first post.
I was diagnosed Stage IV in Nov 12 with mets to my liver and bones. I had a 1.8cm tumour on the neck of my femur so I had a partial hip replacement in Dec. Not what you expect when you're 38.
I have been on A/A since early Jan. It's not easy but it seems to be working. My tumour markers have dropped from 89 on 2nd Jan to 43 when tested last week. I have scans next week to see exactly whats going on.
I have been hospitalised twice since starting it. First time was after only 4 days on the combo. I had a temp of 38.7 and severe mouth ulcers and blisters on my throat. I spent two days in the hospital and had to come of A/A for a week. The second time was just over 2 weeks ago - I caught the flu and after spending 5 days in bed I almost collapsed in the shower. Blood tests showed that I was severely neutropenic - my neutrophils (part of our white blood cells that fight infection) were down to 0.4. Normal levels are between 2.5 -7.5. I came off the combo again and spent the week in hospital waiting for my counts came back up to 1. While neutropenia is a side effect of Afinitor its not a very common one.
I'm back on A/A a week tomorrow. My biggest complaint is dry/raw mouth and taste changes. I find looking after my mouth a full time job - brushing my teeth, mouth wash, steroid mouth wash, dissolvable steroids etc. I hope this eases off - I'm sick of everything tasting salty and I really, really miss red wine and coffee.
Mariol - if you want to ask me anything about the drug feel free to send me a message. As far as I'm aware there is a very limited number of women on A/A here so far.
Kar0 -
Hi Karen.....welcome. That's just awful you being hospitalized twice on this drug. My neutrophils were 1.6 last week. Do you follow a neutropenic diet? I do, but sure miss my salads. All my foods are tasting salty too now and the dry mouth is annoying. Had a dental check last week and was surprised they told me my gums look so great.
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I've never heard of a neutropenic diet. This is my first experience with neutropenia but my Onc said low counts could be "my" issue with A/A so we're going to keep an eye on it. If its the case I'll definitely look into the diet.
I really shouldn't complain about the dry mouth after the horrible time I had with the mouth ulcers but it's really wearing. My jaw is aching from chewing gum to try to keep the juices flowing....!! As for the salty taste - yuck!! Even water tastes salty. I also find that sweet things taste sour. Eating isn't much fun anymore - alcohol even less so. I have a juice with protein powder and/or smooties everyday to try get some calories in.The hospital Dietician gave me a bag of Ensure drinks to try - goodness they're horrific.
Has anyone had did side effect ease off? I know there are much worse ones and I've had my share of those too - but this one is the most persistant.
Kar0 -
I have only been on A/A for about a month. This week I finally no longer have a sore throat although it was not bad so maybe your dry throat will get better. I am like you always brushing, rinsing with Biotene, salt/water. I can only guess this has helped me not get ulcers. I did get a sample of Biotene oral balance dry mouth moisturizing gel which I have not had to use. Maybe that would help you? I mainly hate my morning coffee as it tastes sweet. I still enjoy a glass of wine on weekends and it tastes normal. The one thing I do remember from the info I received was that we are not supposed to eat grapefruit. Also, do you drink a lot of water during the day. I am getting lazy about that compared to when I first started this med and have to force myself to drink more. Hope your feel better soon.
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Hi Karen,
I got 2 horrendous mouth sores and some smaller ones on my tongue and throat about 8-10 days after starting A/A. They took about 3-4 weeks to go away and I have not gotten any since; however I do occasionally have a feeling of one coming on (sore spot but not open). I brush and floss religiously and at the advice of my onc, I use the Colgate Mouth Sore Rinse before brushing and then Biotene afterwards. I also asked my onc and he allows me to swish with 100% aloe vera gel and that helps some too. Maybe ask about that. He also told me that keeping up with the B vitamins can help prevent mouth sores so I have taken to drinking a glass of Naked Blue Machine juice once or twice a day. It is high in B vitamins and doesn't sting the mouth (low acid). I was never a huge fan of the Naked juices until now, but now I love them. They are one of the few things that taste "normal" to me.
I wanted everyone to know that I had a liver MRI last night with my onc appointment today and my liver tumor shrank from 2.0 cm to 1.5 and no new lesions in my liver. YAY!
My biggest issue is still a full-body itchy rash and I am bummed because my onc wants me to cut the dose in half.
Does anyone know if the half dose is effective? (5 mg). That scares me because since I know the 10 mg dose is working, I can live with the rash but he says it is so severe that he is worried about anaphylaxis or worsening allergic issues, skin infections, etc.
Help? Also, sorry for not posting recently. I just got married on 3/2.
Liz
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Hi Liz,
I don't know which to congratulate you on first - your MRI or your wedding. Both are wonderful news. Many, many congratulations.
I fully understand your fears about the lower dose. My Onc reduced my dose to 7.5mg after my first hospitalisation with severe mouth ulcers. I only managed 5 days on 10mgs. Unfortunately the 7.5mg and 2.5mg tablets aren't available in Ireland yet so he told me to alternate 5mg/10mg. When I started back on the combo I decided to ease back onto it so I did 5 days of 5mg, then started 5mg/10mg. I built up to 2 x 10mgs and then to 3 x 10mgs until I was hospitalised again with the flu and nuetropenia. Even though I was only back on it for 5 weeks, and at the lower dose, you'll be glad to know that my markers dropped while doing this. While my Onc certainly doesn't advocate self medication he's happy for me to do whatever sequence I feel I can manage. This time I've started back on the full 10mgs - it was a week yesterday and it's my longest run on 10mgs so fingers crossed. I was so delighted with my drop in my tumour markers at the lower dose that I decided to try the full dose and see what happens. I feel comfortable knowing that I have a box of 5mg and can drop down to that for a few days if the side effects get too hard to manage.
I use all the Biotene products too - and then some. BioXtra products are good too as they come in smaller bottles and tubes that can fit into your handbag. It's a bad sign when you leave your make up bag at home and take a bottle of mouth wash and a tube of mouth gel instead. Thankfully I haven't had a mouth ulcer since the first outbreak. Considering I have suffered with them all my adult life this is amazing. For me I think this is down to 2 things - Lysine and steroids. I take 3 1000mg tablets of Lysine daily. I also gargle with Betnesol 500 micogram soluble tablets twice a day. They take the inflammation down - great when your mouth is dry and raw. I also have Hydrocortisone 2.5mg Muco-Adhesive Buccal Tablets. I put the tablet directly onto an ulcer or tender spot and let it disolve. They are amazing if you catch the spot before it's blossoms. I have also just started taking Glutamine - I swish and swallow 3 times a day. Apparently it's very good for mouth ulcers and your whole digestive tract - we'll see!!
The itching sounds awful. I had mild itching for the first 2 days. It seemed to jump all over. One minute my arm, then my leg, shoulder etc. I started taking an antihistamine daily from then on and it hasn't returned. I also got spots in my scalp - my GP prescribed Betacap. It's a steroid lotion for scalp dermatoses. I'd put it on the spot and it would be gone the next day. Thankfully that only lasted a few days too. Unfortunately dry and tender mouth seems to be continuing issue. Thankfully I haven't had any respiratory issues.
Apologies for the long post but I wanted to share my tips. I spent hours searching the internet looking for personal experiences of Afinitor and its wonderful side effects before starting. I think I was trying to ease the fear of the unknown. Hopefully this post will be of some help to those just starting.
Liz, thanks again for the great news and best wishes for a long and happy marriage.
Karen0 -
Thanks ForestDweller. Hope I'll develop an NED rating. Fingers crossed I'm starting tomorrow.
All the best to everyone,
Mariol
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I have been on A/A for 5 weeks now and am still only on 5mg dose, I wonder why my onc hasn't upped it to 10mg? I have been lucky to have no mouth sores, but I do have the itchy rash on my ankles, shoulders, head and forehead (looks like acne). I have stopped drinking coffee, it doesn't taste the same. Anyway, so far so good for the most part. Anytime I have a cough (one) I get paranoid, due to past stories..but I think that is normal for us, right?
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So great reading the newest messages. There have been many past stories of side effects and, of course, I fear I will get them. I see my doctor Friday and had blood work done today. Do you all have markers that aid your doctors in seeing how this combination is doing? I have never had abnormal markers so I don't know how my doctor will know. Just have a PET scan every six months so won't have one until July. Also, did any of you ask how long we stay on the A/A? Is it like a regular chemo were you are on chemo for a length of time and then go off of it? I have searched to learn more but found there is little info out there. This is where I have learned so much.
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As far as I am aware Afinitor is not a chemo - it's s an mTor pathway inhibitor. Sorry I can't even begin to explain what that is. My Onc tried to explain it to me but it is WAY above my level of understanding.
My Onc told me I will be on it until it stops working. Even then he'll try changing the hormonal - he mentioned Femara. Unlike most - this is my first treatment since my stage 4 diagnosis. It's my understanding that Afinitor is normally added when all/most hormonals have failed to try reactivate their effectiveness.
My Onc uses tumour marker CA15-3. It's not reliable for everyone though. My numbers jump about daily so monthly testing is better, and less stressful, for me.
Karen0 -
I started A/A on January 26, 2013 and my CA15-3 was at 3985. After just 10 days (Feb. 6) it dropped to 3236. Just got lab back from yesterday (March 6) and it dropped to 2167. I'm a little more tired than usual and have had a couple of mouth sores that cleared up with Magic Mouthwash....so I love, love, love A/A! Wishing the same for all of you!
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I'm thrilled about every good report I read. Congrats everyone!!!
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Karen14, where are your mets? That is fantastic news!
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Hi SPAMgirl,
My mets are in my liver and bones. 2 spots on my liver - both on the left lobe. One is 4.7cm and the other 1.8cm - seriously, where the feckin hell did they come from? I have/had 3 spots on my bones - neck of my right femur, left iliac crest 2.5cm and lower left femur 2.5cm. I say had as I now have a new hip so it's down to 2. I can't wait to take my first post surgery flight and beep at the airport security - it's the simple things in life!!
My hope is that Afinitor will shrink the big tumour down to around 2.5/3cms so it will be small enough for Radio Frequency Ablation (RFA). My Onc is so confient that he can get rid of them that he doesn't think I'll even need it - but as soon as it's small enough I'm going to blast it to smithereens. I had a consult with an Intervention Radiologist and he said at 3cm and under there's an 85% of the turmour not returning. Of course another one could pop up right beside it but I have to try. Plus the Radiologist is a total babe!!
Karen0 -
Hi Karen, thanks for your response.
My pharmacist was slow in providing my tabs so I didn't start until Saturday last. So far so good, but it's early days. I've also been put on Zometa. has anyone got any feedack on that?
Positive vibes to all.
Mariol
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mariol, I am into week five and can't see any new changes. I was on Zometa for around four years and then switched to Xgeva. There should be more info on Zometa to search for. I never had any problems with it. I saw my doctor last Friday after a month on Afinitor. My blood work was fine. Tumor markers have always been normal for me so no way of knowing how Afinitor is doing. I have always had a PET scan every six months, but because of Afinitor she wants me to have one in 2 months. I seem to be getting lazy with rinsing my mouth out often because I no longer have a mild sour throat and my mouth never did get sores. I did just read to drink 3-4 quarts of water a day so am trying to remember to drink more water. Tried to explain to my doctor how I stick the pill in marshmellow cream. Forgot to mention I swallow it down with a glass of water. Ha. I did learn that in this discussion.
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HI Mariol,
Best of luck - fingers crossed you'll have little or no side effects.
I'm on Zometa too. I felt a little fluey for a day after the first infusion but no problems since. I've only had 3 infusions so I'm not the best to give advice on this. The plan is that I'll get it monthly for 6 months and then move to quarterly. I also get Zoladex quarterly. I'm in hospital tomorrow for both Zometa and Zoladex and my first scans since diagnosis. Hopefully Afinitor is as good as they say it is!!!
Karen0 -
Thanks Suecolo2 ~ positive reinforcement feedback is great to get. I'm taking my pill with water, after I've had a starter of melon. (I found melon was the only fruit I could tolerate on my first bout of chemo and I have it every day since. It's mainly water itself so that probably helps.) Then I have my meat/fish + veg and then the Aromasin. So far so good. Are you allowed suck a throat lozenge for your throat?
Good luck with all.
Mariol
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Thanks Karen. Fluey is a good description of what I felt also, so I'll take that as normal. Hope the scan gives good results!
Mariol
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I couldn't sleep last night from the itchy scalp I have. I have bumps on my arms, shoulders, back of calves and head. Also today I could not wake up so I spent most of the day in bed asleep. Weird. I feel better now. Been on A/A now for 6 weeks at 5mg
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Chefmiche - that sounds really annoying. Have you tried taking a break for a few days? I'm at 10 weeks and I've needed 2 breaks due to side effects.
I had a mild itch and spots in my scalp. I started taking a antihistamine daily and the itch was gone within a couple of days. I got a steroid lotion called Betacap for my scalp. I'd put a drop directly onto the spots and they'd be gone by the next day. Since taking my last break these side effects haven't returned. Have you tried a steroid cream for the bumps on your arms and shoulders?0 -
So glad we have this site to learn from. I have had an itchy scalp and spots for a week. I never thought it was from Afinitor as I tend to scratch my head when I am stressed out, but the spots always heal in a day or two. This time I have noticed the spots are not healing. I will plan to buy some Betacap tomorrow and treat my scalp as a side effect from Afinitor. I do notice though that I have energy one day and then feel so tired the next. Starting to become addicted to an afternoon nap but fortunately seem to sleep okay at night.
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Anyone had diarrhea as a side effect? I also have mouth ulcers well-treated by a magic mouthwash. These seem to be the only S/Es so far. Caught a cold in hospital & damaged one side of my ribs through sneezing but I don't think that was the A/A. Must learn to sneeze smarter.
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Had an appointment with my oncologist and thought I would have to cancel it last Friday. I had diarrhea off and on for 1.5 hours before I saw her. Then the next day a repeat of the same thing. However, the past 4 days have been completely back to normal. Also, for the last two days I have had pain and aching below my ears off and on. The other night I felt like I had a toothache also (lower left jaw). Went in for Xgeva yesterday, and my doctor wants me to see a dentist before getting the shot. I had a dental exam last month so know it can't be my teeth. She has treated kidney patients with Afinitor and did not seem concerned. She also told me that none of her kidney patients have ever had to go off of Afinitor. She wrote down notes to not miss anything I said as I assume these doctors are all interested in watching side effects we breast cancer patients are experiencing with this new treatment.
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Went to Target to buy Betacap. They said it came from Belgium and a few other countries. They could try to get it but my oncologist would have to prescribe it. My scalp is not that bad so I bought a bottle of Benadry gel which sure feel good on my scalp. Figure it will wash out easily. Will let you know how it works.
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I have felt tired again (day 2) and now I've had chills and only 99.9 fever, has anyone gotten a fevor on A/A? My onc is on spring break this week so if I am feeling bad tomorrow I will go to reg MD to see what I can take to make me feel better.
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chefmiche, I have never had a fever. Do you still have the literature that came with the pills? If so, you may want to take it to your MD as he/she may not be familiar with Afinitor. Maybe others can let you know if they have had a fever. Sure hope you will be feeling better soon.
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suecolo2 I just went to google to find afinitor side effects and this is mentioned: AFINITOR may make patients more likely to develop an infection, such as pneumonia, or a bacterial, fungal, or viral infection. Viral infections may include reactivation of hepatitis B in people who have had hepatitis B in the past. In some people, these infections may be severe and can even lead to death. Patients may need to be treated as soon as possible. Patients should tell their healthcare provider right away if they have a temperature of 100.5°F or above, have chills, or do not feel well. Symptoms of hepatitis B or infection may include the following: fever, chills, skin rash, joint pain and inflammation, tiredness, loss of appetite, nausea, pale stools or dark urine, yellowing of the skin, or pain in the upper right side of the stomach.
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Chefmiche - how are you feeling? Has the fever eased?
I had a fever on Afinitor - after only 5 days on it. Temp went up to 38.7 /101.7 and I was told to go to the hospital immediately. I was in for 2 days. Turned out I had Muscositis -caused by Afinitor. I was in hospital for a week last month with bad flu and sinus infection due to severe neutropenia, also caused by Afinitor, but my temp didn't spike. I get chills most evenings but no temp.
Infections are a big issue with Afinitor. I met with my Onc on Tues and told him that I still had the sinus infection and that I was having severe sinus headaches. He doesn't think it's a real sinus infection as I don't have a temp or runny nose. He thinks it's all Afinitor related - sore mouth, mild sore throat and sinuses. No point in taking more antibiotics - he wants to treat the pain so I'm on Lyrica to see if that works. He's going to speak with an ENT and the pain management team to see if they have any idea's. I was a little worried as I'm still slightly neutropenic - my counts are only 1.3. Apparently anything over 1 is enough for you to be able to fight infection. I've to go straight to hospital if my temp hits 38.
I'll get my scan results today but the good news is that my tumour markers have dropped AGAIN. They're now at 31.5. Woohoo!!! When I met with my Onc he only had tumour markers from last month when they were 43. He was really delighted with that and said with a 50% drop he expects to see slight regression or at very least stable. Hopefully 31.5 will mean definite regression. Fingers crossed!!
For a quick recap - my tumour markers have gone from 89 on 3rd January to 31.5 on 13th March. I think I love Afinitor.0 -
I think my fever has eased, I feel real tired though, so this will be the third day I want to sleep all day. I left word with my onc office but the dr is off and hope the nurse calls me back, not sure what to do but sleep until they call....
Glad your tumor markers have gone down so much Karen! HOpe scans reveil regression! Keep us posted!
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