Afinitor/Aromasin
Comments
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well 2 months into the A/A..my blood sugar is still high while the doc tries to adjust the INSULIN so it can be back down inthe 100's... I cannot believe i am insulin 4x a day along with several pills and the sugar is still high// no pet scan until october18th providing i can get it down...
have rash even put on antibotics and steroid cream.... seems to itch a lot at nigiht .. I HAVE COMPLETE UNREALISTIC INSOMINA !!!!!!!!!!!!! so then I am exhausted when I do get up .normal bed time is 4 am and up by 830..work till 1030 but its wicked since the A/A any ideas or similar issues ... HELP NEED IMPUT A:)
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Chest CT did not show any pneumonitis, so MO said start Afinitor again. The last round of tongue sores had just healed, but overall I still feel tired, in pain. Maybe the AI? Have not been able to exercise enough because of LE poorly controlled. A case of "damned if you do, damned if you don't ". Also dealing with exacerbation of CIPN, not sure why, so seeing medical toxicologist next week to see if any of my current drugs ma have contributed to it, and see what we can do about it. Hope all is going well for everyone here today.
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Terri what I have found with the Afinitor is that for me the side effects got easier the longer I was taking it. i never did have any mouth sores or headaches that some women reported, but I had terrible diarrhea. The good news is that it got easier in time. Also never had the diabetes problem, but I am also on Metformin. That is the diabetes drug that is suppossed to have very good results against breast cancer. Good luck to you and I hope you get a long time from the A/A.
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I just got my first scan results since starting on A/A, and the combo is working! I have to say that this came as a complete surprise to me because my TMs were not going down and I was having some nasty SEs, including some vomiting, a rash, and, as Pearlady just noted above, the big D. But there was significant regression in my original sternal lesion, as well as some recently enlarged lymph nodes, now normal-sized for the most part. My SEs have abated for the most part in the last week as well (aside from the big D).
I'm dancing a jig right now, and recommending a bit of patience to others on A/A who have been stuggling with SEs and/or are not seeing immediate lowering of TMs. Apparently, sometimes there's a delayed reaction with the TMs (we're still waiting on mine to go down, in line with my scans). And the SEs do tend to ease up over time, at least for some of us.0 -
Rosie, there is a point where we, the patient, have a decision to make. If a treatment is so destructive to QOL we cant function then its times to discuss with the oncologist changing to a different treatment. There are too many choices to remain on one that is affecting you so negatively.
I left A/A, no progression but misery and lung damage, had a great year on Xeloda, and now I'm changing again next month from evil Ixempra. QOL counts.0 -
Well I have been on a/a treatment with a few month sours and a rash for two months. Results are great my tumor markers went from 2000 to 234 and circulating cells from 7 to 0. I could breath a bit this month. I will take a few sours and rash. This medicine has been kind to me after a very rough year in femera/faslodex.
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Hi, all - just received the encouraging news from my PET scan that the drug combo is working!! I have been enjoying the last three months and thankful for every minute and this was the icing on the cake.
I think I suffer from every SE there is, but at a minimum. The PET scan showed "opacity in the lower lobes of both lungs, probably from pneumonitis", but my oncologist said it was not worrisome. But should I be worried? I have been fatigued but not coughing. I won't have another PET scan for 3 months, but should I ask for a chest Xray in between scans?
My doctor printed out a table comparing A/A to a placebo and 27% on the placebo reported fatigue compared to 37% on A/A. Does that mean we are just fatgued in general?!! It was, of course, a more marked difference in the other side effects; pneumonitis was 19% on A/A compared to 0.4% on a placebo.
I know, Inky, you switched and I can appreciate why you did. Thank you for keeping us posted on this board and letting us know we have other options.
Sending positive, powerful, loving thoughts.
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Ckj, I would get the advice of a pulmonologist on the lung issue. No disrespect to your oncologist but that is not their specialty. It's good you aren't coughing but pneumonitis can cause permanent damage to the lungs.
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thanks for the suggestion. I don't even know how to go about getting a pulmonolgist, but I will start looking. I am worried about permanent damage. I think this drug is not commonly used and there is a lot the oncologists don't know.
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Your oncologist should be able to refer you. He/she will have to forward the films and test information anyway so you don't have to repeat tests.
Is there a large hospital campus near you? They would likely have an attached medical building with the other specialists.0 -
I have been on A/A for about 6 weeks. At first I was raving about how well I felt, then it hit me! My concern is I feel like every bone in my body just aches. I toss and turn at night and can't find a comfortable position at all. The SE paper that comes with the meds states 'back, arm, and leg pain'. Anyone have any suggestions on how they handled?
My second concern is depression. A different kind of depression than the one we most likely all have from our diagnosis - this one is overwhelming, but comes and goes...again, the SE paper says 'personality changes'. Did anyone have this, and did it dissipate? I had to cancel so many events lately that I look forward to (PSU football game, boohoo!) due to fatigue, that I'm wondering if that is what is getting me down.....
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My MO said my chest CT showed "atelectasis" which is just collapsing of the lung that is typically "normal" for me .... not totally sure I trust this assessment ... but she said no pneumonitis, so start Afinitor again. I did, but still am concerned. Will talk with my PCP about it. I don't have a lung specialist on board, but I am so very very very sick and tired of getting farmed out to more specialists who don't talk to each other, tired of telling my story when they can jolly well read it in the electronic medical record if they would bother to dig through the tome I have generated over the past 3 years. So back to my PCP, whom I love and trust, but have had such mild SEs otherwise I am hoping and praying this CT interpretation is correct and not missing something that could get worse. I have had issues with this radiology department in the past and just do not trust them at all.
Laura, you have just come off some pretty powerful chemo, and that can creep up on you even after you have finished. The fatigue and depression can be really overwhelming, unlike "normal" fatigue and depression. I had such severe fatigue that my PCP/palliative care doc put me on methylphenidate (Ritalin) and it was amazing - the fatigue eased enough that I could get myself out of bed and actually function for 6 hours a day, the depression lifted when I was able to DO more things (I had tried antidepressants before and they made things WORSE!!!), and VERY gradually I have had improvement. The pain also improved because I could move around a little, which helps if you are on an AI (my MO says EXERCISE is KEY to keeping pain down when on the AI). Other drugs can also cause pain, but gentle movement can help a little, but you can end up in a vicious downward spiral (I was there!!!) of fatigue, depression, pain, no activity, more depression & pain, not building up strength so more fatigue .... etc etc etc. Wishing you the best as you continue this journey.0 -
Glad to hear some of you gals are getting good scan results on A/A. I'm tired on A/A, but again, who knows how much is the drugs versus surgery. At the risk of jinxing myself, I have to say I have almost zero side effects. I have been consistent about the saline rinses in my mouth and drinking an entire glass of water when I take my meds.
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I am seeing a different oncologist next Tuesday - he wil refer me to a pulmonologist. I am glad the nurse took me seriously and got me an appointment.
I don't have any coughing, but I have just moved back to Denver and haven't been here long enough to really adjust to the altitude so chalked up my shortness of breath and inability to take long walks to the Afinitor (and age!)
I hope I will have good news to report on Tuesday.
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Benjnate, I too was feeling relieved about doing so well on Afinitor - then it hit me right around 6 weeks. I was in the Rocky mountains so I knew that would affect me, but it was like I hit a wall. I would sit down and fall asleep. I have every SE listed, but at a minimum. I haven't had depression, but insomnia is something I never had before and was really having a hard time with drugs like Ambien and Lunesta. My niece gave me samples of doTerra essential lavender oil to put on my forehead, feet and pillow. It really works and I feel great in the morning.
The good news is I am surrounded by positive, loving family and friends. It makes me so thankful and happy. It sounds like we all have something we enjoy in life (like a PSU football game!) and will keep us going each day.
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be greatful your blood sugar has not skyrocketed.. I am beginning to get it down to the 240's but fearful if i cant get it below 200 I wont get my PET scan in october
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Thanks for your kind words and suggestions everyone. I think I was having a down moment because I haven't been sleeping. However, two things have occurred to me: boy is my mattress bad. How long have I been sliding into the middle and not noticing?! Older mattresses and chemo pain just don't go together! So off to buy a new mattress next week. Also, on a surly moment, I road my rowing machine 2x in one day. Then I decided to ride it the next morning for a longer stretch...no, no, no. Back to just a gentle ride - I feel so much better. I swear I think I was trying to 'show cancer' that I can do this. In the meantime I could barely function for 2 days lol! Have a happy Saturday everyone!
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Does anyone out there also have RA? I read that if you have RA with this drug combo, you're more prone to the scalp acne and boy do I have it! I also thought I had a small fracture on my foot, but it turns on its the RA rearing its ugly head. I've only been on this 2 months, and if it's helping, I can manage, but this is hard! I don't have any scans until next month, so here's hoping it's working!
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That is interesting about RA and scalp acne. I've been on A/A since May and have had scalp acne off and on since July. The itching has finally let up (knock on wood). My PET and CT both show the lower lung issue but family doctor doesn't hear any pneumonia. PET stated that bone tumors issue may be resolved but that a Bone Scan would be best to confirm. Tumor on liver remained stable. Went to Intervention Radiologist and then to have MRI of liver to make sure that the one tumor is it (another area looks suspicious). Hoping for an answer soon so that I can have it zapped off! For those of you with pains, pain is generally caused from inflammation. I drink Moringa Oleifera formulated by Zija. I have been drinking it since May and my pains are less and energy is great. Email me if you want more information (tfedders@columbus.rr,com) Drinking it works out to be about $3 a day. There has been quite a bit of cancer research with moringa. Moringa works at the cell level and contains all the nutrients your body needs (vitamins, protein, antioxidants, amino acids and anti-inflammatories). Glad to help if I can. Terry
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Inky I had the same experience. The side effects, including the big D, did ease up over time. Anothe side effect was decreased appetite, which I can deal with, but even that improved.
I am now on a lower dose than previously since I'm now getting Abraxane also. I got a good year out of the A/A combination, but my onc wants to see if three or four months on Abraxane will knock the markers down and then we can increase the A/A again along with perhaps Faslodex.
Also am taking Metformin. Wonder if anyone else is one this, especially since the A/A combination can cause diabetes. The Metformin is suppossed to be very good against breast cancer.Monica
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Thanks, Monica. One other SE that I realized over this weekend hadn't resolved yet is cold/flu symptoms. I developed a nasty flu on my trip back from Scotland two weeks ago, and just yesterday I noticed that I stilll have some symptoms, such as a runny nose, sneezing, chills, etc.--perhaps I shouldn't have swum a mile on the previous day. Along the lines of tfedders' moringa suggestion above, I ordered the following yesterday from Amazon, http://www.amazon.com/gp/product/B00BHIQIQE/ref=oh_details_o01_s00_i00?ie=UTF8&psc=1
Not sure if it will help, but I'll report back if it does. I do know that Afinitor suppresses the immune system and can prolong infections, so I'm hoping I can shake this bug for once and for all soon. I'm also hoping that the 7.5 mg dose of afinitor, which I should receive on Wednesday, will lessen my remaining symptoms.
Has anyone else had issues with prolonged cold/flu symptoms while on A/A?0 -
Tfedders, I was very interested in the moringa and got excited about it the more I researched, but my onc wouldn't let me take it! She is opposed to antioxidants, so I was bummed.
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Inky when I cut back from 10 to 7.5 dosage it made a huge difference. My GI issues almost totally resolved. I never really had the problem with flu like symptoms, but I do know that Afinitor suppresses your immune system. I am going to ask my onc about Morninga before I take it, but it sounds interesting. I am also on Abraxane now, so I know some antioxidants, especially early on in treatment, are not always recommended. My onc usually allows some antioxidants, however. I was, however, specifically told not to take any supplments with mushroom, but that many others are okay. It seems all of this is such a fine balancing act.
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Hi fellow A/Aer's - Wanted to let you all know that I just returned from the hospital after 5 days due to shingles!! I guess my resistance was so down that I got hit with them. They were on my head and face, and since shingles can cause blindness, i was admitted to get a continuous IV of the meds. No eye issues thank goodness. But I started out with bumps on my forehead, which I thought was hives - because the SE paperwork stated that hives can easily occur. Never realized they were shingles until 1/2 of my head was swollen and the Worse. Headache. Ever. Now I'm feeling good and I start my A/A again on Monday...back to the grind. But I just wanted to post this on this thread in case anyone gets symptoms like mine - get to the doc asap!
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Sorry you oncologists doesn't want you to take it. My oncologist doesn't have a problem with moringa... he believes in an integrated approach -- Plus he's from India where doctors prescribe it for various issues --high cholesterol, sugar and blood pressure. He knows that many of his colleagues don't agree. However, the goal for moringa is to get your body back into balance so that your body can begin to heal itself. The Zija product is considered food. You get antioxidants from food you eat and a nutritious diet is important. The only medicine that it interferes with are those that say to take on an empty stomach. But I also know that it is very important for you to listen and have trust in your doctors. Best of luck!
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Good Luck Inky, It looks like you are ordering an immunity builder from Amazon? or the link is different than what you posted http://www.amazon.com/s/ref=sr_kk_3?rh=i%3Aaps%2Ck%3Azija&keywords=zija&ie=UTF8&qid=1379970637 . I believe that you can buy Zija (moringa olfeifera formulated to drink -- Called Supermix or Smartmix) from Amazon. You can also go to http://tfeddersen.myzija.com to order. I would be able to help you with price if you email me. You can get it for cost plus tax...no shipping. Let me know.
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Chickadee,
You have stated your point very well! I totally agree with you. "There is a point were we, the patient, have a decision to make". I am glad A/A treatment works for some ppl. I had a horrible experience with it. I had scary labs (triglycerides were 666, blood sugar skyrocketing, etc), my feet and hands swelled up, and I felt lousy. My onc. did not seem alarmed until my scans showed it wasn't even slowing my tumor growth. If you are offered this treatment, enter with your eyes wide open.0 -
Laura, that was so nasty to get shingles! Hope you are on the up now. Been on 10mg of A/A two and a half weeks now and certainly feeling it. Mouth has nasty ulcers which are getting me down. Tried gargling with salt/bi carb and chemist gave me manuka honey which has done nothing. Off today to arm myself with alum, biotene mouthwash and toothpaste, infact you name it i am going to try it! Oh and better late than never, marshmallows! Fatigue has hit me big time, I have slept so much this last week, I have no energy or inclination to do anything. Plus I have a sore instep which I did rushing To my car in stupid sandals. However weeks later it is still there, so don't know what that is about. Gp gave me a referral for an MRI if it didn't heal, but have not done it as seems overkill. Funny thing is it is not sore even if poked when sitting. No diarrhea or achne, although get sore and smelly under breasts if not kept dry. I am having no back pain now and have been on 20mg of oxycontinen day and night and onc wants to wean me off it, so am trying 15mg to see how I go. Finished abraxane course week before starting afinitor and onc waiting till November for scans nd bloods to see if there is any change. Love Gail
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I'm hoping someone can give me more insight about the side effects of Afinitor. I have been on it for 11 days so far and the first three days I experienced some nausea but it went away after the third day.
I saw my oncologist yesterday. I had blood work done and we discussed how I was doing. He told me that the side effects usually don't appear until you've reached a saturation level. My question is, "How long was it before you experienced the side effects?".
My doctor wants me in every two weeks to monitor me. We will continue this schedule until he feels I'm stable on the medication.
Has anyone else been down this road? What should I expect and approximately when will these side effects happen?
I would appreciate hearing what your experiences were.
Thanks,
Janet
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Janlee,
I'm also new to Aromasin/Afinitor. I get the lowest dosage of Afinitor 5mg. I've been on it for about 10 days. My SE's so far are not as bad as when I started Femara. I have very mild joint pain & just got my first canker sore (mouth sore). I'll ask my onc for some Magic mouthwash. Going in tomorrow for follow up. I'm a bit tired and may consider taking it at night as I did with Femara.
Hope you do well on this.
Terri
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