Afinitor/Aromasin
Comments
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tfedders, that's horrible! What an insurance nightmare. How could they approve the first procedure and then deny the procedure that the first procedure was preparing you for? I'm hoping and praying that your doctor wins the third appeal, for your sake but also for everyone fighting this disease.
Good luck! Please keep us updated on this.
Love and hugs,0 -
Granna1948, Glad you are feeling better and the low potassium explained your fatigue. Hopefully when your potassium levels are under control you can start back on the Afinitor and 5 mg. will do the trick for you.
Leah, scary about the creatinine levels. I have only one kidney and am on 15 mg. of Afinitor, so that worries me. Will you be able to go back on Afinitor when that is under control?
tfedders, how frustrating!! I am afraid that we will be seeing the insurance companies making those kinds of decisions for us more often. I hope that the doctor's 3rd appeal will be successful and you won't have to hire an attorney. It's a tough place to be in: Pay tons of money for a lawyer, or pay tons of money for the procedure. Not fair!
I have managed to have 5 days headache free!!! Just had my third acupuncture treatment and had lots of people praying for me. I am so thankful, it's amazing to wake up in the morning feeling fairly pain free.
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I know this may sound like a trivial problem compared to what others are having, but has anyone else had severe thinning of fingernails? I asked my MO if any of my meds may be causing this, and she said the Afinitor. She says it is rare, only about 5% of patients get it, but maybe more would if they were on it long enough. The problem is that they are so thin they catch on everything even though I keep them trimmed to the nailbed, they rip into the nailbed about 1/3 of the way so that there is a longitudinal split that cannot be filed out or clipped out as it would require removing the front 1/3 of the nail! And now they catch on all my LE garments and other clothes, my fingers feel like a hammer has hit them with throbbing pain (which may be exacerbation of the CIPN as it feels like it did during chemo). So between the nails being soft and ripped and catching on things, struggling with LE itself and the LE garments, the pain from the neuropathy in my fingers making the LE garment struggle even worse .... *sigh* .... So part of this is a vent and part of it is a question - anyone with any suggestions? I am taking Biotin 5000 units/day, using lots of good hand and nail lotion, painting my nails with nail hardener, even tried liquid bandage. Mostly I am putting bandaids on half my fingers, so between glove on one hand and bandages on half my fingers, my manual dexterity is pretty much zilch. Again, rant + seeking advice.
Lindatwo, so glad you are getting some relief from those headaches!!!
Inky, tfedders, granna, leah, and all the rest of you who are still hanging in there with this drug - sending hugs and hope that it continues to work for us.0 -
:wave: hi, I have just got home from onc and bone strengthener treatment and filling anyone thats interested my results. I finished abraxane chemo and was given afinitor combined with Aromasin tablets to take until I have progression. I have been taking the combo for 2 months and have got over the mouth ulcers thank goodness but have skin that without warning will start itching , and scratch my back in bed sometimes till it bleeds where I had the palliative rads to spine.i have been feeling pretty good overall and believe if I put any anxiety out of my mind it's not really there lol.
I saw my oncs offsider and preferred him to the last young girl I saw. I went through the usual of him not telling me straight up what my results are but more interested in how I feel as my tumor markers have been rising steadily, and in the last 2 weeks gone from. 74 to 142 which indicates something is going on. I always prefer to have the glass half full so asked him if it's possible it's a flare from the new medication and he agreed it certainly is possible.
The wonderful news is there is no further bone lesions and are stable and the cancerous nodes around heart and lungs have gone, yay! There is a area in my lower left lung that has no fluid but a white feathery area has appeared that usually would signify I have an infection, but I feel fine. He said this could , on further questioning could be cancer. Also there is a tiny 7mm spot on my liver which could be an unidentified node that's always been there and missed , or cancer of course.
I asked if I would continue on the A/A combo or have to do chemo ( no way I want that this soon) and he said he would discuss with the boss.
He came back and said "Good news" your onc thinks the lung issue could be just the result of the medication you are on, so will continue with the tablets and have a lung x ray in 4 weeks to see what's going on. I know the afinitor can give you serious lung issues, but at this stage I have no effects from whatever is going on.
I had 2 blood pressure tests, last week was high,and these 2 were an hour apart and the first was normal and the second was high! Go figure.
So I read my report and they say that suspected areas in lung and liver could be metastasis, but in my heart I don't think they are, but of course that could be wishful thinking. He said tumor markers can be unreliable as many that rise are nothing and others that are good have progression which I knew anyway.
Will continue on my merry way. Love to you all. Gail. :grouphug:0 -
Ok, now it's just weird! Now because I know there is something in the bottom of my left lung going on it's almost like I can feel something now ( as in feeling a bit sick this morning and breathless) the onc kept questioning me whether I was breathless as in unable to shower myself or something and I said no I was fine, but did mention because I am overweight, have arthritis and don't exercise I am breathless anyway! Am I more breathless than I was prior to afinitor? Who knows! I don't know much about anything anymore, but I do know I am more comfortable in bed sleeping than I have been in a long time! Will just have to see how it pans out at the chest x ray in a month I guess. Love Gail0 -
Gail! All in all, your scan sounds good! I don't want to be too much of a Pollyanna, but I too suspect that the lung thing is just an infection. That is a major SE of Afinitor--infections galore, esp. of the lungs. And so long as they are keeping an eye on that tiny spot on your liver, I don't think you should worry about it either. When my markers first started rising after my original diagnosis and my MO first ordered a new set of scans, she became almost certain that I had liver mets because of two fairly big new lesions discovered there; but several biopsies later it was confirmed that I had developed not one, but two different kinds of completely benign growths in my liver since my previous CT scan. (Of course, I'm kind of special that way, but that's another story.) Like you I had my first scans two months after starting A/A, and I was thrilled they were good because my markers and multiple SEs were telling me otherwise. My markers didn't start going down until my next visit to my MO, but when they finally dropped, they dropped quickly. I hope your experience is similar!
And Linda! I too am experiencing problems with my fingernails and toenails. I've tried everything you have, and a few other things, including anti-fungal applications (Afinitor is known to promote nail fungi), Vitamin B12, and most recently Biosil. I'm still having nail issues, and if it gets worse, I will probably make an appointment to see a dermatologist. I recently read on another forum of a women who went to a dermatologist who prescribed Genadur nail lacquer and Oxistat nail lotion to treat any underlying fungal conditions and strengthen her nails. Apparently, it worked for her, so if I don't get relief soon, I may try that as well. Good luck with your nail issues!!
Greetings to everyone else on this regime. I wish us all the best of luck!
Love and hugs,0 -
Linda, my finger nails have been fine thank goodness! But my 2 large toenails have never been right since chemo in 2006 and now the right one is lifting and because I wore new enclosed shoes yesterday when I got into bed last night my toe was bright red and was very sore. Also I had heaps of dental work done prior to afinitor and now the side of my root canal has broken away, just another thing to worry . I feel very lucky in that I don't have headaches or nausea, change of appetite or anything like that, I just hope it's not doing some sneaky damage also to make a different problem. Now I am wondering if dropping my dosage would control my itchiness. Love Gail0 -
Hi Ingrid, thank you for your experience, it's great to hear you are not alone on this journey. I felt so much more in control speaking with the onc from being on this forum and being able to quote facts from real people going through this treatment. I have my fingers crossed I have a drop in markers like you did and appreciate your reassurance. Love Gail0 -
I've been on A/A for two weeks, and have noticed a change in my fingernails, although not as dramatic as you describe. They are thinner and tearing easily. I've also started itching quite a lot--enough that I made my back bleed from scratching yesterday. I've been using Eucerin lotion, which helps a little, and my MO recommended Clariton, which I'm starting today. I just got a flu shot and a pneumonia shot for the first time ever. It occurred to me that I could probably die from either disease.
Good luck everybody. May our benefits from these drugs be many and our SE's be few!0 -
I've had 16 pills now, and I'm feeling awful. These are 5mg pills, and my MO is planning to raise the dosage. I don't even have the terrible side effects that some of you ladies have, but my QOL is really suffering. I'm really itchy, bloated, my abdomen hurts, I'm constipated, and mainly, I'm too exhausted to do anything. I just go from the bed to the recliner and back to bed. It may not be entirely the Afinitor causing the problems. My cancer has spread to the peritoneum, I'm taking Claritin for the itching, and I got flu and pneumonia shots on Thursday. I have a huge, red, hot welt from the pneumonia vaccine. Anyway, my point is that if this is the best I can hope for as far as QOL, I might be ready to stop treatment. Do the SE's usually get better or worse the longer you take the meds?0 -
MaryLW, I've been off afinitor 12 days and still feel bad. I was on the 10 mg. I certainly know the fatigue angle and acne. My right eye was swollen almost shut and huge acne over my eyebrow. Then I got a scare from my onc when they said my electrolyte level was dangerously low and I had to go in for an emergency 4 hour infusion. I was on the afinitor for 3-1/2 months. I don't know if she's going to lower me down to 5 mg or just start another treatment. She had said something about navelbine.
Good luck, and I hope you get some relief soon.
Granna0 -
Hi, Granna. The problem, I guess, is that we don't know for sure what's causing the symptoms. I wonder how long it takes for Afinitor to get out of your system. Navelbine is a type of chemo, right? My MO said that after A/A, the next step is chemo. Before I take that step, I want to talk with him about what the goals of treatment are. If it's going to add a couple if months, but make me feel worse, I don't think I want it. Of course, when the time comes, I may feel differently.0 -
MaryLW, I have been on afinitor for 8 months. Early on I had lots of intermittent mouth sores and rash, all of which seems to have gone away. I did have a holiday because I developed a cough, so no Afinitor until my chest CT came back OK. The crankiness and fatigue may be due to Afinitor, may be due to the AI, may be due to just having cancer. Some of the GI stuff you are experiencing may very well be due to the mets, and if the Afinitor works, this could resolve slowly. I had my first PET/CT since January a couple weeks ago, and there was improvement in several bone mets, some decrease in activity in lymph nodes and soft tissue areas, and no new areas. So it takes a while to work, and for me, the SEs that I started with have resolved mostly. Except I think most people get diarrhea, I seem to have developed constipation the last month on it. So basically, I have no idea or answer to your questions, just a hug and a shoulder to cry on if you need one.0 -
it is difficult to deal with but IMO I'd rather have this than chemo at this stage. I brought myself some new enclosed shoes which were very expensive so I could walk comfortably and they have rubbed on my big toenail which has been not good since chemo in 2006 and now it's badly infected, you can't win. I appreciate you posting Linda as we don't have any long termers on the meds to let us know if we adjust to the symptoms. I was given an antihistamine for the itching , but will try Claritin as nothing is working, the funny thing is the pimple things don't go away, they are still there weeks later, moisturizing does help with the itch somewhat, but they're still there. I had abraxane before the afinitor so not sure what has done the trick in bones and nodes, but something has worked. The lungs have something that looks like an infection though, so I'll be happy if that disappears. I find I lay in bed till late morning and in the afternoon I can easily doze off in my chair, infact I snore when I am awake lol!, never done that before. Granna your side effects were particularly nasty, I hope you improve soon. Love Gail0 -
Linda, it's helpful to know that your SE's got better with time. Actually, I feel better today. I'm itchy, but the abdominal pain and extreme fatigue are gone. Thanks for your support during my depressed time!0 -
MaryLW, I have been on Afinitor three months. I had mouth sores, nausea, headaches and itching. I too decided if it didn't get better, it wasn't worth it to me. I started out taking 10 mg., raised it to 20 mg., then lowered the dose to 15 mg. (two 10 mg. tablets one day and one 10 mg. tablet the next). The nausea finally went away, the mouth sores cleared up, and I am going to acupuncture for the headaches. That has helped immensely! Now it is just the itching. I take Benadryl for that so I can sleep at night without digging at my arms. I was just thinking yesterday that if it wasn't for a little lower back pain, I could actually forget that there was anything wrong. (Then I thought "oh my gosh, I hope that doesn't mean the meds aren't working!") Sheesh, immediately slapped myself for being so negative! Anyway, it got WAY better for me, I hope you experience the same.
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Thanks, Linda, for the encouragement. I was really feeling bad when I wrote that post. I'm a lot better now, except for the itching, which has gotten worse. I'm taking Claritin and slathering myself with Eucerin, both of which help some. Right now I'm on 5 mg, but the MO is going to increase that dose. Yuck!0 -
Mary, I may end up having to increase my dosage too, so hoping and praying for us both that the increase won't affect the SE's!
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I haven't been on in a couple of weeks, have been through quite a bit. I had to be hospitalized for pain control. While I was in the hospital my sister-in-law who has been battling cervical and uterine cancer was admitted. She got her DX in February and done several rounds of chemo, but it was the small cell cancer which is very aggressive and had already spread to her liver. They had told her it sept. that it didn't look good and they hoped she would at least make it through the holidays. Well she didn't...... She passed away just a few rooms down from me. She was a wonderful person and will be missed!
I also had to stop taking the afinitor because of second round of mouth sores. I had another CT scan last week and visit with my OC. My blood work showed that my hemoglobin was really low so I had to go last Friday and get two units of blood. Then i received more bad news. Had to start on this medication because of some new lung mets they saw from the Ct in September, now this Ct showed new ones in my liver. My OC says since I've had to stop the afinitor twice that we haven't really had the chance to see if its gonna work. So he put me on the 5 mg dose and I have another scan in 8 weeks.
I've been really depressed and just feel like I'm not at all winning this battle. My OC nurse said they dnt knw what is gnna wrk so everything is trial. She talked with my sister and said when its this advanced they try more to focus on the quality of life. Well that sure didn't make me feel better. It's just so hard to accept that I may not have much time left. I have bone mets throughout my whole body and now lungs and liver.
My husband doesent want to talk about the inevitable...... But I think we need to be prepared. I just feel like I need to start getting my affairs in order. I have no idea if this medication is gnna work.....but even if it does, how long before it doesent?? I'm sorry to sound so negative. I'm just not ready to leave my family. It's soooo hard to stay positive when the news is always bad.
Is there anyone else in a similar situation as mine? I'm praying I'm able to tolerate this lower dose.
Good luck to all of you, sorry for the ones that are battling these side effects.0 -
Mary, I hope the increase to 10mg doesn't increase your side effects, thinking of you. Linda, I can't believe the dosage you are having, sounds like a nightmare to me! I hope there are many more days you can forget you have cancer. Rlw, what can I say, what a terrible time you have been through and the sadness of having your sister in law dying and being so close in rooms, so terrible. No wonder you are depressed and with the added worry of if your medication will stop progression. If you are not on anti anxiety meds I think they would help you deal with things better, as so many ladies swear by them. Are you using a herbal toothpaste and soft children's toothbrush, I am sure they helped me with mouth ulcers. I feel for you and dearly hope you can get through the depression and have many more years with your loved ones. I wish it for all of us living day to day. Love Gail0 -
Rlw, am so sorry you are having such a tough time right now. There is a thread called "A Place to Talk of Death and Dying" that has some very practical advice, I think about page 25? If you feel up to it ... None of us there actually believe we are in the process of dying in the very near future, but all of us realize it will be sooner rather than later, and we are sharing ideas on the process of approaching this phase of our lives.
That being said, I concur with Australia that anti-anxiety meds could help get you through for a bit, take the edge of some things. They don't FIX it, but help you focus and be able to cope a little better. The lower dose of Afinitor may be helpful and with fewer SEs. I started at 5 mg, then upped it to 10 without going to 7.5 as I had hoped, but SEs really did not get worse with the gradual increase.
You don't say where you are located, but are you being treated in a cancer center or in a community setting? There are several more options for treatment for you according to what my MO told me, and so a succession of meds may be your path to controlling this disease. I have been offered the oral chemo Xeloda if mine progresses further or the Afinitor quits working, and there are a couple of drugs in clinical trials. Have you considered being in a clinical trial? Those involve getting standard treatment along with either new drug or placebo, and if the new drug shows promise early, usually those in the placebo arm are offered the new drug at that point. Downside is lots of doctor visits and labs.
Mary, hang in there, take each minute as it comes and BREATHE! Some days I get about 30 seconds at a time, other days I get almost the entire day without major anxiety or depression. So much of it depends on outside activities, a phone call from a friend, a chance to DO something fun, a bright sunny day. Or facing a pile of papers and bills and insurance statements, rainy cold day, dishes piled in the sink and baskets of laundry waiting and being lonely and not able to sit down and play piano to lose myself in my music. So I try to remind myself to BREATHE because everything always changes. And then I am grateful for those moments of joy and beauty that DO grace my life each day.
Oh, yes. I have mild skin itching and use lots of lotion, but it is the scalp itching that just makes me CRAZY because my fingernails have become so thin they split and snag on my hair (cannot wash it and scrub my scalp good). So I found a pick comb made of plastic that I cannot even remember when and where I got it, it is so old .... anyway, I put shampoo in my hair and lather up as best I can, then use the plastic comb to GENTLY massage my scalp. Then use a good hydrating moisturizer and also use a little Eucerin on the scalp while the hair is wet. Any other suggestions are welcome!0 -
Linda, that's really good to hear that your side effects didn't get worse when your dosage was increased. I always use a plastic pick to comb my hair when it's wet. I don't know when or why I started, but it's been many years ago. I also use it to scratch my scalp, which is itchy, but less so Thant back, arms, and thighs. I've been taking Claritin, because the MO said it wouldn't make me drowsy like Benedryl does. Well, it just occurred to me that I take it in the late evening, and I'd like to get drowsy then! So I think I'll try Benedryl.
Rlw, I don't know if I'm in your situation or not. The MO, when I had only bone mets, said I could expect to live several more years. Now that the cancer has spread to my peritoneum, I'm afraid to ask him again. I go to the Place to talk about Death and Dying thread, and I've found it to be helpful and comforting. I'm trying to prepare myself for whatever comes.0 -
Hey Girls was trying my best not to post but have a question, I have now been on A/A for a couple months and my right lower jaw bone hurts is this one of the side effects?? I have the scalp acne which for no better way to put it SUCKS!!! I've had the headaches the itching and minimal mouth sores but have noticed the big D trying to rear its ugly self as well as nausea and I am taking 10 mg scan next month little something in the liver area which I am hoping is good., but I would like to be able to sleep once again and to feel good just one day a week.0 -
deb, I've been off the a/a for two weeks and still have some symptoms. Yes, I have had jaw bone pain, and still have some. This has been a rough ride for me, too, with the acne, low electrolytes, etc., but the acne became unbearable, especially my right eyebrow. I will have deep scars there. I see my onc next week, and I guess we'll discuss if I go back on a 5 mg dose. I started on 10 mg, and I think that dose is too much for me.
This thread is getting sad for me, and I don't know if I'll keep reading or posting. No one knows how long any of us will be here except our Lord, and that's who I put my faith in.0 -
Oh Granna please don't leave the thread I think its just a coincidence that we all seem to be down right now I am going to blame it on the weather haha , I'm with you on the Only the Lord knows what our future holds and if it wasn't for my faith I would be six foot under already. I am just tired of not feeling well but at least I am here I hope you stay with us here and that we all have great Holidays0 -
Granna, it is sad, but we're all supporting each other and sharing information and advice. I hope you'll stay. This thread is the most important one for me.0 -
Oh, Granna, am so sorry this has become a sad place. I think we all go through cycles of being down and then upbeat, so I am sure there will be more positive stuff soon. We are definitely here to support each other and to share experiences and suggestions for coping with SEs, so if that is helpful to you, please stay, but if it isn't, please let us know if we can help you in a different way. Sending wishes for moments of beauty and peace today.0 -
Thanks so much for the advice from all of you. Gradually day by day I getting out of this down state of mind I have been in. My best friend always has great advice for me and I am just putting all my faith and trust in my lord and savior. That's all I can do.
I will definitely check out the Death and dying thread. Granna I really hope my post didn't make you sad and cause you to want to leave this thread. I just had a rough couple of weeks and I'm trying my best to be more positive.
Gail and Linda I actually do take an antidepressants it's just sometimes when u keep getting negative news even that doesent help.
I live in North Carolina and go to a cancer center. It's called The Hope Center. My dr did tell me that their were several medications we could try if one doesn't work, it's just scary when on the mean time it keeps progressing. I didn't qualify for a clinical trial because my cancer was HER 2- I'm pretty sure that was the reason. Sad to say but I still dnt understand the HER 2- and positive. In the beginning when they gave my dx I was so overwhelmed that I dnt even remember which one for sure I am. My husband, sister and bf could tell me. I do know my cancer was estrogen fed and that is why I have to get the big needle shot once a month called zoladex and I also get xgeva, this put me into early menopause.
So far I'm doing well on they 5 mg. I am trying to be faithful about brushing and rinsing after I eat. Do you get the herbal toothpaste at a vitamin store?
Have another question....... Do any of you that have mets in the skull get sore places in your head. It's like I have bumped my head but I haven't. Sometimes it hurts to comb through or even hurt the last time I seen my hairdresser when she was washing my hair. I've told my doctor about them but they act like they dnt knw. I have said do u think its from the mets in my skull and the his nurse shook her head as to say yes.
Again, thank u so much for the advice!0 -
Rlw, I bought herbal toothpaste at a health food store. Later I got some Biotene toothpaste at the drug store, and I think it's even better. These are both good because they're gentle and don't contain sodium laurel sulfate.0 -
Yesterday, I received my second shipment of Afinitor, and I was happy to see that I'm still on 5mg. We're going to be in NC for Thanksgiving, and I was afraid I'd be away from home with bad SE's. So far, I've been very lucky with the SE's. The only really bad one is itching. I have rashy spots all over my body, and sometimes I can't keep myself from scratching them. As a result, I have broken skin and bruises! I'm taking Claritin and using Eucerin lotion. Does anyone have any other suggestions?0
