Afinitor/Aromasin
Comments
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I am new to this site and am on my 8th day of the a/a meds. In reading these post I am so confused and upset that my oncologist doesn't explain my scan results at all. I have no idea what the "T" markers mean, or what the readings means. My scan says I have 4-12.9 ??? It also says I have pathologic compression fractures with mild height loss at L5? I have had stable CT and bone scan results for over a year until now. My CT I had a cpl of weeks ago showed some nodules on my lungs that have enlarged since my scan in may, which in may they weren't mentioned to me. This time my CT was followed up by a PET scan because of the nodules. It also showed that I have some areas that have increased activity. I have mets in my skull, neck, spine, ribs, hips and my and femur. Pretty much throughout my body. I have a lot of hip pain and the scan shows that my pelvis and spine show the most activity. Of course no one has came out and said to me! I keep telling them about right hip pain. I have never been shown one of my scans is that normal?? I think I have a good Dr but he is not very good at explaining things. Just not a real personable person. My husband loves him...... I however, do not. I would feel very uncomfortable about changing, there are several in the office I go to.
I also have some questions about the afinitor. I read that some ppl say to put it in marshmallow crm to swallow. Is that because you can get the sores from it touching your mouth? I'm so fearful of getting them. Also read that some ppl use biotene mouthwash after meals. I guess this is to prevent them as well? I know I'm suppose to stay out of the sun and this probably sounds like a dumb question but is that because it will make you sick or because you will burn easier or both???
I have been very down for the last couple of weeks. I always knew that things could change but i also was so scared of it going to my organs. I have just felt doomed. I know there are a lot of ppl that are in way worse shape than I am and probably shouldn't feel this way. I want to be here to get my 14 year old son through high school and to be able to enjoy my first grandchild who is a little over a month old. I have two sons the oldest is 18.... Yes he became a father at a very young age, wasn't planned of course. He did graduate, Im thankful of that!0 -
i have been on a/A for about 2 months . my blood sugars have gone sky high and on insulin trying to get it regulated so i can feel better. had alittle shortness of breath so today had a cat scan of lungs and it showed nothign. now my onc wants a full cardiac work up .. I feel like the only thing wrong is my sugar and its making me exhausted and not feeling right.... tumor markers will be drawn tomorrow and then appts for cardiac stuff man !
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Oh man, my oncologist recommended Afinitor/Aromasin today. Now I am worried.
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Anyone have swelling? I just started and my feet, knees, and hands are swollen. Knees super sore. I am miserable and scared. My dr office called this morning and my ferritin level s very high.n they were going to get back to me but haven't heard yet
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I have heard and read wonderful results .... however I also had very good luck with Femara for about 18 months ...with minimal side effects .so maybe i am spoiled ....
every one is different so dont be scared its worth a try
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The swelling and joint pain is more than likely from the aromasin. The hormonal meds are notorious for causing joint pain. I have been on this combo for over a year now and find it quite doable for the most part. I do have my bad days when the fatigue is just overwhelming and my kids understand and leave me rest as long as I don't do it for a week. I normally go in to the onc for fluids when the fatigue is really bad. My youngest was12 when Iwas dx with mets and I watched him graduate high school and now I am watching him go through college.
When it comes to having a relationship with your onc, this is your life, not your spouse or significant others. You need to feel good about the choices that are being made and you have every right to particpate in makeing the choices of what chemos you are going to do. If you do not like the bedside manner of the onc you are using, ask to be scheduled with another one in the same firm and see how you like them. You have the right to have all your questions answered to your satisfaction. I always write my questions down and write down the answers in his office. I know when I was first dx my poor onc was stuck with me for at least an hour in one appt because I was scared and nervous. She was very good about not rushing me and answering everything to my satisfaction. So if you think you would like to meet with another onc, tell your husband why and if he doesn't like it, he will get over it as long as it is for your better good.
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I went to see my primary care and rheumatologist today, and my primary care said A/A is a "beast!" I told her I couldn't agree more. My blood pressure is through the roof, acne all over my head, mouth sores, weight gain and fatigue. My rheumatologist thinks I might have gout in my right foot, which can also be caused by afinitor. BUT my primary pulled my bloodwork up in the system, and my tumor markers had dropped 40 points! So, if that keeps on, I will accept the beast!
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I agree A/A is a freakin beast on my body... seeing primary care doc in 2 hours and need him to get my blood sugar in control now as i feel crappy all the time... I had 3-4 days of little shortness of breath when I was talking (thinking its anxiety from sugar or sugar itself). but they sent me for ct scan of lungs yesterday and it came back fine .. so now onc wants a full cardiac work up .. GEEZE LOUISE !!! really I dont want to go through this as the A/A is kicking my butt enough.. I am exhausted all the time but in imy heart I feel if my sugar was back in control i would be fine... I have had to begin taking insulin 4x a day and 7 sugar pills and still hig 275-340's .. whether i eat or not .......... this beast better be working , havingtumor markers done today I assume if not gone down will probably change protocols .. I JUST dunno .I had 2 great years on femara .wish it never stopped working .
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Rosie there are so many other treatments. Decide what you will and will not tolerate as far as QOL. Then discuss different treatments that could gain you a good result.
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Beast is right! Feeling miserable. Legs and feet below knees are aching to distraction and mouth ulcers getting me down. I went out last night for a. Belated degustation french dinner last night for my belated 60th and what should have been a wonderful evening was marred by how I feel. Arrived stressed after getting a 20min detour with roadworks and asked to take a seat in the lounge till our table was ready. Well my friend is big like me and walks with a cane and the lounge was so low there is no way we would ever get out of it. Then the stools were so high you needed a step ladder to get on them and we are both over 5'9"! So had to stand uncomfortably.Yay our table is ready. Decision of who sits in the wrap around chair and who sits on the bench along the wall. I felt she is worse than me so took the wrap around, not a good idea! Was such a tight squeeze I could hardly sit in it and had to put my handbag behind my back so I could perch on the edge of the seat. She had no ideahb how uncomfortable I was until I could stand it no longer and when the sweets were served I sat next to her on the bench. The meal was tasty little morsels, but some had nuts or vinegar etc and now today after feeling my mouth ulcers were healing yesterday are worse than ever. I have gone from feeling so much better from the treatment I have received to feeling miserable and sorry for myself. I hope the side effects resolve or I really don't know whether I could continue with this treatment. Had my winge now lol and to use Scarlette O'haras quote. "Tomorrow is another day"
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I also started A/A 10 days ago. Got my first mouth ulcer a few days ago. My onc perscribed Magic mouthwash for me. It helps a bit---mix of lidocaine, maylox, antibiotic & something else. It will make your mouth numb for awhile to eliminate the pain by the sores. Hope this goes away soon. As far as raising blood sugar levels, my onc said my diet would be good to stay on---I was doing a modified carb diet to lose weight and eliminated most carbs, except for 2 pieces of fruit a day. We'll see.
Going for radiation consult today.
Hope I get a long time on this one as I did with Femara. Femara kept me stable for 4 years.
Best wishes to everyone on this combo.
Terri
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Bump
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On my 11th day of the a/a treatment. Have had no se until last night. I have the itchy rash on different parts of body and was in so much pain last night I thought I was gnna have to go to ER. My 5 mg Percocet wasn't touching my pain. Haven't had that much pain since the beginning of this dx! Just wondering if its this new medication or from the increased activity in my bone mets. I had to be hospitalized last year for pain management. I hope and pray I dnt start hurting like that again. Does anyone get anything stronger for pain prescribed for them? I found some Vicodin that my plastic surgeon had prescribed back in April when I had my first reconstruction surgery and it helped some.
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I was taken off A/A for 9 days while I had shingles. Despite shingles S/E, I felt healthier in a way I haven't felt since before A/A - and when I say healthier, I mean emotionally too. But...while off chemo, I didn't feel 1 ache or pain at all ( I have mets in sacrum and liver) so I really feel that the A/A is working. PET/CT is October 15 and where I go, you go see your onc right after for your appt and discuss the results so I'll know then. But my heart tells me that as yukky as the S/E are, I need to buck up and do it. I'm just surprised at how much A/A messes with your emotions/personality...not fun!
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Benjate, I agree with you. The side effects can be pretty bad, but with my tumor markers down, I think it's working for me, too. I hadn't made the connection with emotions, but I have noticed some down times which is unlike me. Good luck with your scans. I have a bone scan next Friday, so I'm hoping it looks better. Yes, we have to buck up to the beast!
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Do those of you with mouth sores use the gel caps to put the afinitor in? If not you can buy them on amazon for less than $5.00. If you put the pill in the gelcap and take it you should eliminate your mouth sore problems. I've been on this combo for over a year now and that has really eliminated the mouth sores. If I do get one I swish with a baking soda/salt/warm water mixture to heal them quickly. The mouth sores are the worst part of this drug.
I do have fatigue but I have that on any drug. It's so odd, if I have nothing to do I'll spend my whole day sleeping, but if I know there is something I have to do I can be up and running all day without an problems. The SOB I normally only bothers me when I am carrying the laundry up from the basement.
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Thanks LuAnn,
My mouth is so sore-- I now have 2 canker sores & on Magic mouthwash. It only works for about 20 minutes. I'm also very exhausted on A/A. Hope these SE lighten up over time.
Terri
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I actually used oragel on one of mine that was really bad and it numbed it. If you get the canker sore outside the mouth, use abreva, it should clear it up fast. Also, swish with the water solution anytime you eat.
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my Onc prescribed MuGard from access pharmaceuticals .... i have only had to use it a few time when I felt sores beginning and have not really had one erupt .....
I am sooooooooooooo exhausted , and blood sugar have cause me to be on insulin which is causing hell with everything..... hoping my sugar gets better by oct 18 for the PET scan
HOWEVER I am still able to work as a school custodian every day which enables my insurance ... I was wishing to go on S>S> D> but you do not get medicare until you are out of work for 24 months and yo have to wait 6 months to get a one month check ..... that is after you get approved so I want to just keep going cause I think its the onlly thing that gets me up and moving . when i sit or lay around i get so stiff its awful ... we CAN DO THIS
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It is my day 8 on A/A. I take them in the morning on empty stomach. I had one mouth sore which disappeard quickly just with baking soda rinse. I have sore throat at bed time. It seems better during the day. Anyone else experiencing sore throat with A/A? Or it is plain cold coming on?
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spre throat is one of the questionis they ask , dealing with side effects.. I get a scratchy throat sometimes... i took my pills at noon today so hopefully ill get some real sleep...........i also find that spicy things hurt my taste buds damn IT ... AND ALSO FOOD JUST DOENT TASTE LIKE IT SHOULD . this i hate but not as much as the type 1 diabeties since beginning these meds...
well best of luck and everyone have a good week ,and keep those going through bad days in your prayers , it is all we have our faith,determination, prayers ... goodnight
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Yes I have a sore throat. Got gp to check yesterday and she said looks ok, but feels like I am getting a cold but I'm not. Feeling shite I can tell you, so worn out. Went to a party Sunday and taken me 2 days to get over it. Will persevere, well not much choice is there? Told my gp if my markers don't drop gonna stop this for sure. I have gone from thinking of a part time job to barely functioning. Hope all is well. Love Gail
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Well, after 17 months on this combo, it's time for me to move on. It kept me stable until this past quarter. My onco says I've tolerated it longer than any other patient she knows of. I am thankful for that.
I started Xeloda yesterday. Day #2 today = raging headache, fever and violent vomiting within the first 24 hours... so to tell you the truth, right now I am missing A+A!
I'll be moving on to the Xeloda and Zometa forums in a couple of days. Thank you all for your camaraderie and support over the past year and a half! May God bless each one of you to find your way in peace with your treatments.
~lulubee
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Hi Gail in Australia!
I know exactly where you are coming from--I've had all sorts of cold/flu-ish symptoms since starting A/A--I think I actually did catch a flu a little over a month ago; it was nasty and the symptoms dragged on and on, and then when I felt almost better, the symptoms rebounded last weekend after I overexerted myself.
The good news is that I'm starting to feel much better again (knock on wood), and this may be a complete coincidence, but yesterday morning I had a consultation with a oncology nutritionist who strongly suggested that every day I take prebiotics along with a good probiotic containing lacto bacillius, as well as freshly ground flax seeds. For my prebiotics, at present I'm just swallowing a large whole clove of raw garlic and eating a banana. The theory is that the prebiotic/probiotic combo can give a huge boost to the immune system. In any case, I actually am starting to feel much better today, so you can take that for what it's worth. In my case, I really do want to stick with this combo if I can because my last set of scans showed significant regression (although my TMs have been slower to come down).
Lulubee, I wish you the best of luck with Xeloda. You probably already know this, but Ebru/stagefree's many posts will attest that she had a miserable experience when she first took X, but that it turned out to be a total wonder drug for her. I hope you have similar luck with it!0 -
just a warning to not go for a teeth cleaning if you are on Afinitor. My gums were in good condition, but after the cleaning they have been stinging so bad it hurts to drink water. It's just my back ones around my wisdom teeth. They had some plaque build up as they are so hard to reach. Anyway the scraping agrevated them a bit I guess and as the days have gone on it just got worse with the Afinitor. Kind of like a mouth sore if you dont take care of it it just gets more painful. Same thing. I have only managed to get up to 5 mg every other day. I'm off until I get my gums back to normal. Why couldn't they decide to keep tinkering with this drug until they figured out a way to make it more tolerale. In my opinion they just weren't finished. This should not be the end project.
Oh and hot chillies are not my friend either. grrrr
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Yes this combo is a beast. I have acne all over my scalp, on my right arm and leg, and mouth sores. Oh joy. I have my bone scan on Friday, and hopefully it will look much better. My tumor markers are down 40 points so that's good. Anyone considered going on a ketogenic diet. I've read some good things about it as cancer apparently thrives on sugar. I'm going to alk to my onc about it next week.
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Granna,
I was on a modified low carb diet to lose weight b/4 starting A/A. I lost 40 lbs. The only carbs I got were 2 pieces of fruit a day, but I did really well on it. With the mouth sores, I have not stayed on it but plan to go back once resolved. My doc said it may be good to go on because Afinitor raises blood sugar levels.
I sure wish they would have coated these pills so we don't get mouth sores. I have teeth cleaning in Nov that I may be worried about now.
Terri
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Regarding dental work, I had a filling a couple weeks ago and ended up with a mouth sore in the area near where they were working (actually it was in the area where the clamp on the rubber dam to isolate the tooth). Anyway, it did get better, thank goodness, so today I had a cleaning and so far, so good.
How is everyone doing as far as energy levels? I feel like a slug.
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Seeing my oncologist tomorrow to get Xgeva shot. My PET and CT were hopeful Sept. I was concerned about leaving the tumor in the liver alone. Went to Intervention Radiologist and had an MRI of liver done. He found another tumor but said he could treat both. On Oct 8 I will have the procedure where he goes in through my groin to my liver with a catheter and then injects chemo beads that will be contained to only the area with the 2 tumors. After 2 weeks, he will go through skin into liver with needle and freeze the tumors to kill them. Hope it works! I began my journey when my son was in 7th grade and hoped to see him graduate HS. Now he has started Bowling Green and of course I want to see him graduate. I feel that my relationship with my oncologist is the most important relationship. He is someone that I can express my fears, ask any question and maybe more than once. At first he didn't see the need to do anything after my scans. I felt uncomfortable leaving the liver tumor alone and he asked me if I would feel better if I had it taken care of. Writing down questions helps. He also gives me copies of all my test results. Wow! the radiologist printed out pictures of the CT scan of body/liver and the PET liver. Absolutely fascinating. I'm hoping to stay awake and watch the procedure!
I'm a little more tender at night when the coolness come in. I drink some warm tea at night. It's easier when you're retired and kids are out of house. Only dogs to take care of---they're enough! Hopeful today.
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Hi Ingrid in New York! Doesn't the forum bring people around the world so close, it's wonderful. Thanks for the info on the probiotic, will look into it as I just brought Yakut the other day thinking it may help. Yesterday and today I am feeling so much better mentally which I hope will continue. Perhaps I am becoming acclimatized to it, I hope so, perhaps it's because the mouth sores are clearing. I have been doing the marshmallow trick and not sure if that's why. Gosh that's some serious treatment you are having tfedders, I hope it really kicks arse!! Your right about bring so much easier when you don't have to worry about working or meals, don't know how some girls manage. I just have my 21 yr old son at home doing uni and even then many times I will. Uy a meal because I just can't prepare one. Now I think I am lucky not getting sores, that would be dreadful! Michelle, my teeth need a clean and now I am concerned, don't want to aggravate my gums! Keep strong girls. Love Gail
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