Afinitor/Aromasin
Comments
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208Sandy- Sorry about the prediabetic numbers. Maybe diet changes and or a med to lower your sugars might be better then quitting the A&A. Cancer will take you out faster then the prediabetes.
Skylotus- sorry to hear your markers have climbed, the side effects are no fun especially if it isn't working. I wish you well on finding something that will work.
Well I had my 4 week appointment. Last appt. March 11 my H&H was 10.5/34. Today it dropped 10/32. So my chronic anemia continues. The onc mention possible causes scar tissue taking up space in the bone marrow (thus not enough marrow to replace blood), low folate, low vitamin B12, low iron. He did not offer to test for my current levels of iron, folate or B12. I asked him what he sent to pathology since I got 2 insurance bills for tests run. He said he didn't know. I wondered why I ever bother to ask questions. We will meet again in a month. Continue with the current dosing and side effects. At least the fatigue is explainable.
I get so very frustrated with my PCP. Back in Dec/Jan when my H&H was 5/17 and my BP was 90/60 I stopped taking my BP meds. So after multiple transfusions and starting the A&A my severe anemia was on the mend, counts restored to 10.5 and 34, platelets 140 (they were 10). Now it is 3 months later and I have been taking my regular BP 50mg meds that I have been on for years. I go to renew the losartan and they cut it half to 25mg. I called in the script on Monday for a refill, called again asking where it was and found out it went to the wrong pharmacy; then called again to ask why the dosage change and was told the on call doc won't renew it. My doctor was away today at a conference today and doesn't work Mondays. I am out as of tomorrow. Why does it take 5 days? A&A makes my BP much higher then it would be normally. I have mild congestive heart failure and the losartan helps that.. It just seems everything is a constant struggle. I am just disgusted. Oh and I had my eyes checked and there are changes suggesting I am heading for glaucoma! What next??
Sometimes I wonder if the universe is calling me home and I am just ignoring the calls.
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I am going to add one more gripe to my vent above. I wasn't going to post anything more but why not get everything off your chest right? Today when I went into the lab to get my port accessed for lab draw and monthly flush, I was distracted by the chatty nurse and I like to chat too. We were blabbing away talking about afinitor and aromasin and how she sees so many women doing well on that combo. I was asking her questions etc. To make a long story short as I tell her I have an open port needs heparin, 1inch huber needle blabla.. I begin to notice that she has clean gloves on (not sterile), opened the package of the needle and pulls off the sheath with clean gloves, flushes it with saline, cleans the site and before I realized.. popped the needle in. It happened so fast and I was in mid sentence that I didn't even say anything. I was thrilled she got it first try, since I have a history of miserable attempts.. multiple -like 4-8 attempts. But I have never had a port accessed without it being a sterile procedure. Just goes to show you how being distracted, not paying attention, laying flat in a reclining chair looking up and yacking away.. makes you miss things. Also after a blood draw they should flush it twice with saline and then heparin (if your port calls for heparin some don't). There is no point in complaining about it, since you will forever be branded. (I agree with Bon on that) So here is a safe place to vent. Thanks.
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Sorry but I won't be continuing A/A if I go into full blown diabetes - my husband had diabetes for 21 years so I am more than familiar with it - I also spent almost three years volunteering at the local outpatient diabetes clinic so I already follow the proper diet (I have for years and years) I am also dealing with sky high bp and have had my meds quadrupled since the start of this combo - I am 68 and quality of life is everything to me - so after my scans unless there is marked improvement I will move on to Faslodex or ??? Also I find the exhaustion and weakness on this combo to be debilitating.
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Sandy- I understand completely. I am 55 and quality of life is 100% of my goal too. The fatigue and weakness is definitely no fun. Good luck with the BP control hope you find a med that cuts the numbers. Some of those meds have SE too, but I am sure you know that. Faslodex might be way better for you. Good luck finding a doable path!
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Rosevalley,
I was dxd with reoccurrence 3 months ago we are the same age and mine is also ILC. I have liver mets and bones they are not sure yet. But a biopsy confirmed the liver. My onco started me first on a combo of chemo carboplatin + gemzar right away . I had no symptoms , my markers were normal , my liver enzymes till now are normal, and all blood work for also is normal. I discovered the mets by mistake. There was talk about afinitor, because i consulted 2 other oncologists. But my treating onco refused to mention it for now, when i asked why? He said because if i give you this now it will extremely tire your body , and right now you are healthy i want you to keep you this way as long as i can. Even though ILC responds partially to chemo, he said i will take what i can get , no progression is good. Now i still have one session of the chemo session, i did already one scan after the third. I have no progression the largest tumor is a little smaller and the small ones are less prominent. He told me if after the treatment we get 25% i will start you on aromasin alone. I am afraid of afinitor frankly and i told him after i read theside effects i prefer not to take it. My questions are the following: where are your mets? What treatments did you get ? And how are you on A/A? I am sorry to ask these questions? But most people are IDC and would like to know how people with ILC are dealing with this. Since ILC rarely becomes her+ which gives more treatment options. My cancer is grade 2 with very low mitotic rate. Thank you and i am sorry to burden you .
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Woodylb- Sorry you had to join us here on club mets. Yes Lobular cancer is a weird character, seems it likes other areas then just bone, liver and lungs. I have had the same treatments as you, ACT, radiation, arimidex, aromasin, faslodex an now A&A. So far 4 months in to it, A&A is better then arimidex and chemo. I had a PET scan in Jan that showed bone mets pretty much everywhere except hands, feet, skull. The cancer ate out the bone marrow, thus the anemia. This happened before in 2012. My cancer isn't aggressive either, or at least as of 2012 it wasn't. Since over the last 7+ years this zebra hasn't changed it's stripes, I suppose it's ok to think it won't.
I have only been on this combo 4 months and the numbers improved until yesterday. They didn't drop much, but they didn't improve. So another 4 weeks will pass and we will see again. My onc doesn't believe in tumor markers even though they correlate with my scans and results. So with only a CBC to go on.. hard to tell if A&A is worth the fatigue and achy bones/muscles. I decided after 6 months of arimidex that the misery just wasn't worth it and quit AMA. So I really do understand that something can ruin your quality of life so much that it isn't worth it. But you pay a price for noncompliance - progression and pain. At least this current doc treats pain, grateful for that!
Aromasin and Afinitor was a little rough start, mouth sores, weird taste, achy, zits, heartburn and couple episodes of nausea/ vomiting, feeling full etc. Now it seems just the fatigue and achy bones/ muscles are the primary issue. Oh and the biggest issue of all.. is it even working for me? That we will need to wait and see to answer. I think Romansma also has lobular cancer you can ask her too. It seems from reading these posts that folks have a rough start with afinitor and aromasin and then it evens out and they do better. Then there are a few who just can't tolerate A&A. I do not take afinitor every day and after listening to folks.. I don't think I would. Every other day is enough.
I am glad that your chemo combo worked so well. That's great that it kicked it back. So maybe if you get a clear scan and no concerns you can coast on Aromasin. That would be easy. If it works that would be great. Keep us posted on which treatment you decide on. I don't think I would be afraid of trying the A&A.
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Rosevalley , thank you for taking the time to answer i really appreciate it. In a away i find ILC to be a junp into a large sea for us and our doctors. Its behavior is like no other. I don't know if that is good or bad. But again i thank God we are still around and hopefully for a while. Mine is disconcerting a little even though i have extensive liver spots largest is 2.5 cm the rest is smaller than1 i am still attainment level 1 , which means no pain pain till now all blood test were normal and still are as for the bone before i went to my oncologist i did a lot of xrays with a bone doctor i have extensive calcification on my hip area and my rhumatism is double , he told me this is not cancer i have bone islands , he said bone mets from breast cancer show in black on an xray not white he seemed sure that is was not cancer. Is till sent all these to my onc and he requested an mri on the hip area still they could not tell, then he requested the bone scan and the abdominal frontal scan in which we discovered the liver mets. Both my oncs don't agree woth the radiologist about the bones , they think the symptoms don't fit nor before or after the chemo, but the liver is more vital to them and the treatment is systematic the left the bone issue for now.
Bone islands are usually non cancerous but when you have already had cancer it has to be confirmed. Now they told me if they don't get a clear scan showing how the cancer is behaving or not loll they may ask for a PET as it may show if there is a cancer activity. We will see , they seem to be optimistic , I on the other side leaving everything to fate , i will cross that brodge when i get to it. Of course i will let you know which treatment i will follow after chemo. I already spoke to trish who is also ILC but turned her2+ after reoccurrence and she seems to be doing very well on kadcyla thank god. And i saw rosmansma too. I keep tab on ILC ladies because we are not so many. Please keep me informed also on what happens with you. Be well. Big hugs.
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Good morning. I've now been on A/A combo for 1 month. This morning I woke up with pain on the right side of my throat when I swallow. Here it is Sunday, and not sure if I should continue the A/A combo, no one to call. My head tells me not to take it until I see my oncol. on Tuesday. I'm also dealing with scalp sores, tender to touch. Any suggestions? I was going to go to CVS when they open to buy a throat spray and maybe throat lozenges. I don't think I'll be eating any time soon.
Also, I read that Eucerin would be good for my scalp? So after I wash my hair, put Eucerin on. Should I then rinse then dry? Not sure how that works. Any help for y'all would be great. 0 -
Good morning, my fellow AA enthusiasts! I am at the 3 week point on Afinitor after going off for severe throat sores. I don't have a voice this morning. My throat doesn't hurt....yet....but fear is starting to set in. The sores, last time, came right at the 4 week point. I am still on 10 mg daily. At the last MO visit, my counts were starting to fall again, especially WBC.
ILC is certainly a strange character in the bc world. Chemo doesn't seem to give much benefit, at least it hasn't for me so far. I really want this combo to work.....it just makes much more sense to me than chemo. My mets are confirmed in bone only (spine-every vertebrae,shoulder, ribs, pelvis, hip, skull) but there is a nodule in my lung that hasn't been biopsied yet. Faslodex/Femara was the easiest treatment for me so far, but it was useless in stopping progression.
This treatment combo is not a walk in the park. But, it has worked for many. If I can get past the bad side effects, I can live with some of the other stuff. I am still hopeful!
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Thanks Romansma. I hope you can get thru your treatment. My throat is hurting when I swallow, and just not feeling well. And on top of that, I am dealing with scalp sores, tender to touch. I took two 250 mil.. of ibueprehen to see if that would help along with gargling with salt/water. I am also using Bioteen moisturizer for the mouth. Here it is Sunday, wondering if I can use anything from CVS for relief until I can call my oncol. Monday morning. I have a scheduled appt. on Tues with him to get my lab results. Help please.
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I also have Lobular breast cancer with liver mets. It's been about a year since my stage IV dx. We went straight to chemo because I had progresssion while on Tamoxifin for almost 5 years (lobular in situ found after biopsy of benign lump). I also got a double mastectomy cause we still thought I was stage II. Chemo worked great for me, took both liver mets down from over 3cm each to below 1cm each. It took 8 months of Taxol+Avastin (clinical trial), 28 infusions. I have been stable since Nov, '13. I would still be on that chemo except for a false progression read of a CT scan.
I'm really pleased that even though I went without treatment for two months there was no tumor growth. Now I'm slowly adjusting to the A/A combo because testing showed a PIK3CA mutation driving the cancer. Mouth sores were my main side effect til my onc prescribed Dexamethason elixir as a mouthwash. It cures and prevents the ulcers completely. Ask your onc about it!!!
I tried to start with 10 mg, but have switched to 5mg. I'm able to take it 3 days a week, and then will try every other day, then daily. My onc assures me the 5mg dose is all I need, Hopefully, this will maintain my stable status for a long time. I think I can live with this. Maybe cause I just finished a very tough chemo regime, it feels like a walk in the park.
I sure hope all of us do well for a good long time.
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Ladies - anyway you can get a prescription for magic mouthwash phoned in to your pharmacies - my onc had me using it from the very beginning and now after six weeks I haven't had any sores of note - it is very expensive but it works and I cut down to using it in the morning and at night and used saltwater rinse in between. It's not that your throats are sore - they are- but you don't want those sores to get out of control.
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thanks JimmieBell and 208sandy, JB, I wish you well on this AA combo. Hope it keeps those bad cells down for a long long time, 208sandy, I see my oncol Tues. but for sure putting in a call in the a.m. Anyone using anything special for scalp sores? I have been dealing with them for several weeks now. I started with 10 mg A/A and still on it since a month now. I took myself off Afinitor today but will take the Aromisin alone til I talk to oncol. tomorrow. I'm thinking he will want me to stop Afinitor for 3 days but not sure. Hell, I don't want to take it feeling this way.
What a bummer.0 -
Hope you feel better soon, Naturegirl. I've had the sore throat and the scalp issues and didn't really find anything that helped.
I see many are on doses and schedules other than 10mg daily. Does anyone know of any studies where they dosed at 5 mg or on an every other day schedule? I'm a science gal and need to see the numbers. I would love to have an alternative in case things get too rough in the next few weeks.
I found enough energy to move my bed to a different wall in my bedroom so I could see out the window when I'm in bed. I've been spending a little more time in my room and wanted it to be a little more enjoyable. I'm here now....enjoying the blue sky, listening to the birds chirp, and thinking about Chickadee. I was sad to see that she passed.
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Naturegirl - somewhere on this thread I think someone mentioned getting a steroid foam from a dermatologist for the scalp sores - I know that hydrocortisone cream (1%) works on the acne because I had some and it worked - I am seeing my PCPon Tuesday and I'll ask her what she recommends - anyone know what to do for the nose sores - I am using saline nasal spray and vaseline but they are never healing - probably because one of my drugs makes my nose run 24/7.
Romansma - my onc told me last week that she would never dose at 5 mg because she didn't think it would be effective - I am getting 7.5 every day she wouldn't lower the dose but said if things get bad she would just take me off it altogether and I'd go on another treatment - she really wanted me to try 10 mg but I told her no way and she has seen some other cases where they moved it down to 7.5 and it worked - it is such a new treatment there aren't enough studies giving results as yet. I am waiting for my scans next month and if I don't see marked improvement I am getting off this stuff because it is really affecting my life - I am spending way more time lying around in my bathrobe than I am comfortable with.
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Thanks, Sandy....that's what I suspected. I hope it's working for you!
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I'll let you know what happens with the 10mg every other day schedule. To early to tell yet.
I am bummed about Chickadee. I will miss her wit and posts. Very Sad.
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I look forward to hearing Rosevalley.
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Romansma - I was just switched to 5 mg from the 10. I started on the 10 and 2 weeks later developed an itchy rash so was taken off of it, started on a steroid and when that was finished, the rash came back so was taken off the Aromasin, as we think that is the cause. I am taking another steroid pack and will finish it tomorrow, if all goes well I will start back on just the Afinitor 5 mg for a couple weeks then try the Aromasin again. I think my onco will see how things go and if all goes well we will increase the dose of the Afinitor, if I get the rash back we will switch the Aromasin to Femara or Arimidex. I took Femara for 2 years in 2009 when the cancer came back, with no side effects to speak of, when it quit working I took Aromasin for 3 months with no side effects so thought I would not have any problem with it this time but I think it caused the rash, we shall see. Anyway, I do not think it would hurt to ask your onco about dropping to the 5 mg and see how it goes, then increase as you tolerate if he is willing to try it. My onco did not say anything about the effectiveness of the 5 mg but I do not see that it would be any different than 10 mg every other day, but then I do not know that much about this stuff. I am a 22 year survivor so whatever this can give me is good with me. If I can get a few months, years, whatever and then move on I am satisfied. I do know it is much easier than the Taxotere I just got off of, but also know it is not going to be easy either, at least I am hoping to have good days while taking this, the Taxotere I had 10 halfway good days out of 21. I know I was not on this combo long enough to judge but it did seem a little easier for me. I hope you are having a good day, love the scenery out your bedroom window, I would have switched it around so I could see that also.
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Thanks Romansma! I love your picture and would have done the same thing myself. If/when I reach the time where I am in bed, I have a blind or two I could open to see my front courtyard and have planted beautiful potted plants to enjoy their beauty! Plants make me feel sooo good, ya know!
jeanieb, I hope your regimen of drugs works out for you. It will be interesting to see how that goes.
Thanks 208sandy, yes, let me know what they tell you in regard to what to use for scalp sores. Not sure what my doc will say or do with me. I do want to stay on this crap but it's hard. And, I'm not sure just what my oncol. will go to next. As I type, I'm feeling okay. I would be willing to stop Afinitor for several more days, then get back on this stuff once again. If I had same or more problems, I may stop altogether, not sure.
I'm so sorry to hear about Chickadee, I didn't know her unfortunately. That is got to be tough on her family. What a bummer.
I do feel a little better today. Decided not to call the oncol. today as I have a scheduled appt. with him in the a.m. tomorrow.(Tues.) I've got plenty to tell him for sure and hope he can offer some relief for the right side throat that is hard for me to swallow. I went outside this a.m. to do some gardening and began to feel bad, but ya know what, I pushed on and it passed some. My 91 year old plant mentor once told me, 'Old Age is Not for Sissies', and ya know what, 'Cancer Is Not for Sissies'. Let's toughen up girls! I'm truly trying.
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Romansma , beautiful picture, i hope this combo works for you with the least of SEs...
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Romansma , beautiful picture, i hope this combo works for you with the least of SEs...
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Hey Girls, hope you are all doing good tonight. My voice came back, although it's still a bit scratchy. That's good news. 22 days in and nothing imcqnt deal with so far.
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Romansma - glad you're doing so well - I have a PCP appointment tomorrow to try to solve some of the discomfort - pink eye, acne, nose sores, weakness, high blood sugar, etc. I am a mess! Hoping all this stuff will fade with time (or not). Have a good sleep. S.
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208Sandy - interesting that you have pink eye. I got an eye infection in March couldn't get rid of it. I got mild antibiotics from the PCP that didn't get rid of it. So the eye doctor gave me tobramycin drops which seem to do the trick. I still have zit break outs but when the eye drops run down my cheek I smear the drop on to my nose! Works great for getting rid of acne! Two for one special!
The weakness does me in got to say. It was sunny today and we have 1/4 acre of grass that needed to be cut. I tried to mow the front lawn. It's not that big, I needed 2 rest stops. Whooped I tell you. I am just pathetic. I couldn't do the back yard. Grass was too high and I was too tired. ugh. I like yard work, but it does me in. We built a fence this weekend and my daughter and husband and I tore down and rebuilt 25 feet. I am pretty handy with a power drill and screws but boy I paid... owwwwyyyy. I hurt every where. Pain meds both days. It didn't stop me but I have to rest constantly.. do stuff.. rest... do stuff.. rest. Pain. It just makes my husband and daughter work harder and makes me feel bad.
I was wildly nauseous after mowing the lawn and had to take zofran.. gave up on dinner, took a nap instead. Haven't had to take zofran in ages. Stuff works! I surely hope the side effects are worth it, for all of us.
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I went to my monthly oncol. appt. this a.m. My cancer antigen level went down from 59 to 42 so that was good news. (at the time of lab work, I had been taking A/A combo for 21 days. All of my blood work was within range so he and I were both pleased. I told him what had transpired on Sunday with right side of throat hurting when I swallow and that I had stopped Afinitor and continued to take Aromison. He said I did the right thing. He wants me to not take Afinitor until the throat issue goes away and then continue on the regimen once that heals. Head sores - he told me I could use cortisone cream on the sores. I asked him in his experience how long the A/A combo works. He told me he sees 6 months to one year before progression for his patients. He said tho that the study showed 20 months until progression. He has been in practice for some 25 years and of course he has been my doctor for 23 years. I will have cat scans in two months but I will see him in one month. At that time I will also have my Xgeva shot. I asked how long would I be taking Xgeva shots. He replied 2 years but gradually spaces them out. I began taking Xgeva shots May of 2013. In November 2013, he decided to have me take shots every other month which is what I am now doing. He didn't mention lowering my Afinitor at this time. He told me a while back 10 mg Afinitor is the standard and that is what they used for the study. He prescribed 'magic mouthwash'. I asked him if I would see NED (no evidence of disease) at some point in time. He responded since I have cancer in my lungs as well several areas of my bones, I would not see that. BUT, on rare occasions, he has seen that. He hopes to see shrinkage and no progression with this regimen.
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naturegirl - I went to my PCP this morning and my tm's are dropping also - the blood is great except for the blood sugar which jumped up after I went to 7.5 mgs - she isn't worried about the blood sugar yet as it wasn't an A1C test - she also thinks if it does cause diabetes it can be "handled" (I'll be making that decision) - anyway she said that we could use Nizoral shampoo for the scalp acne (it's available OTC) also she said that baby shampoo is a good choice also. She prescribed anti-histamine eyedrops for the pink eye that is the watery kind and if I get the crusty kind she prescribed an anti-biotic eye drop. I am using 1% hydrocortisone ointment for the zits so that's all I know. I was invited to go on a trip out west flying there and back and she said "no" she's worried about me being immunosupressed and said that perhaps after I've been on this treatment for a while and if it's working then I could take a holiday from the meds and travel at that time- oh well, I barely have enough energy to pack a suitcase anyway.....
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Naturegirl and 208Sandy - sounds like two great visits and you both got encouraging news! Wonderful. I didn't realize that 20 months before progression was what the studies saw, but in his practice 6-12 months was the norm. I learn so much on these sites with folks sharing what their doctors tell them. That's for the 10mg every day. I don't know if I could tolerate that. Naturegirl you have had cancer since 1991! Wow 23 years with the same oncologist. Amazing. Keep sharing, We all learn so much. Good luck to all.
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208sandy, glad to read your tms are dropping as well! Thanks for the info on what to use for scalp sores, acne and pink eye. I'm sorry you can't make your trip but your doc knows best. Hopefully you can go in the near future. You said you have been on A/A combo some five weeks? At one point when did your doc downgrade to 7.5 Afinitor? After I read your diabetes woes, I was afraid to see what my glucose showed and discussed that with my doc since I have been having pain in my left big toe for some time (this started when I began Femara which I took for 15 months) and began having stabbing pain on and off on the ball of my foot recently. When I saw swelling from the front of the foot last week, I hurriedly made an apt with my podiatrist who took xrays and saw nothing. I had googled diabetes and one of the signs is stabbing pain and foot swelling.
Rosevalley, thanks! I'm glad I could pass along info from my oncologist to y'all since if anything can help us, we would share. Yes, my oncologist has been in practice for I would say more than 25 years. And yes, I was first diagnosed with stage one IDC in 1991 at age 40. I am now 63 years old. In 2007, my mammogram showed something and yes, I once again had stage 1 breast cancer but this time, an altogether different one, hormonal breast cancer. I had one breast removed in January 2007. In November 2012, I was diagnosed with Stage IV breast cancer and was horrified and extremely surprised.
My SE is letting up some, so I guess tomorrow I'll go back on Afinitor. My doc said to wait til the throat pain when swallowing leaves. We'll see. I'm not looking forward to this but, as we can see at this time, the A/A combo seems to be helping. I do have that metal taste in my mouth after I eat and now even without eating after one month of taking these drugs. Can anyone offer any suggestions in dealing with that? Even my coffee is now tasting bad. Oh, one other thing, my oncol said this treatment is not considered chemotherapy.
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I've got a big nasty zit on the side of my nose. Haven't had that happen in years! 49 going on 15. I have a facial at The Ojai Valley Inn Spa tomorrow....hope it helps. I got a pedicure a few days ago. Everything about it hurt. Especially my shins when they do the massage part. I see I have bruises there this morning. Not sure why....maybe the low platelets? My voice is still very scratchy......sound like I've been smoking for 50 years. But, no sore throat yet!
I'm encouraged to hear the TMs moving down with a few of you. My TMs have never been a good indicator so I will have to wait for scans or new pain.
Have a great day everyone. I'm excited for this day, for some reason.
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