Afinitor/Aromasin
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Oncology appointment today. Hemoglobin up to 10.8 better direction. The rest of the labs are not back. Will try some lasix for the edema in my hands and feet. The rest of the annoying side effects you just have to suck up. Oh well the price of life right? Somebody mark this drug down to reduce the side effects! Ha ha. The onc said it beats chemo. Got a small ulcer under my lower lip after not having one for over a month.. see you should never say they just stopped. Maybe I could ignore the side effects if it ever stopped raining and was sunny?
I keep trying to maintain a perspective. I am safe. I wonder what kind of month it has been for the 275 Nigerian teenagers abducted, terrorized, wondering if they will ever see their families again, or live to be old. I hold them in my heart, praying for their safe return.
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hi everyone. 4 days into A/A and I have had problems with low blood sugar twice. I called the doctor and hypoglycemia is a side effect? It was not on any of my info. Anyone have this problem?
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Just wanted to update everyone as I have been on A/A for 10 months now. 10 mg a day - only missed 2 days in 10 months - and I finally hit the wall. I was holding onto everything due to weak joints, a fatigue that can be described more like being completely zoned out, and my lymphedema came back after 4 yrs. I was scaring everyone who saw me try to walk, and my mantra was "Don't worry! It's not the cancer, it's the stupid medicine!" I finally called my Onc who said take 3 days off and see how I feel then. Tonight I start up again, but I am shocked at how almost-normal I feel again. I could cry when I think about how toxic this medicine is, but it is doing so well in taming the cancer that I will continue again. I guess my point is, keep persevering ladies, this stuff does work, but a break is needed sometimes just to get your head on straight again. Off to clean the house/laundry/etc while I got some energy, and wishing all of you a 'feel good' day today
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Benjnate - glad to see you're doing so well on the combo - I however threw in the towel two weeks ago today and am still having huge problems with being breathless if I try to do anything - also I am turned off by food - any kind of food (so not like my usual foodie self) - I have another PCP appointment tomorrow to find out what's going on - now remember I was only on A/A for six weeks and at 7.5 - I am drug sensitive however - I do know too that this combo makes us look quite sick to the rest of the world - I am quite tired of the "are you o.k.'s" I know people mean well but it makes it hard to be around anyone from outside my close circle of friends. I am proud of you for "keeping on, keeping on" you're one brave lady. Hugs, S.
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Benjnate - I did that by accident. I left in a haste for our cabin Saturday and forgot all my cancer meds. Peace and quiet in the woods! Here it is Monday and I feel better. (despite having the runs up there, maybe because of the change in water?) Anyway, Sunday I took a long walk, well long for me, and I felt pretty good! I wasn't as stiff and achy. I still have issues with being short of breath and pillow top feet with lots of walking. But it was so nice to have some days off.. so tempting to enjoy a longer and longer reprieve. I cringe when I have to take that white tablet.. ugh... existential crisis just swallowing it. My oncologist thinks this A&A is a pretty easy combo... comparing it I guess to adriamycin and cytoxan? Well in that case it is easier.
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Rose and Sandy - I was at a Metastatic breast conference a few weeks ago, and the doctor that spoke about Afinitor mentioned a few times how 'toxic' it is...it is NOT an easy drug, that's for sure! I never really had breathlessness, but my breathing is a little more labored on Afinitor and that didn't dissipate at all over my 3-day reprieve. Funny story, I took my meds after dinner tonight, and when I went to take the Afinitor again, I stuck my tongue out at it first! I couldn't believe I did that, but that's how I feel about it. Like a little girl stomping her feet, lol!
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That's pretty funny, but i can relate! I take the afinitor every other day. I told Sandy before that if I had to take it every day I would wilt. My compliance might take a hike! Too much! It's like hiding the box so you don't have to see it. The games we play.
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Funny about the Afinitor - I used to hide the box because everytime I saw it I had a panic attack. Seeing PCP this afternoon about the breathing problems - I need some of my life back!
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Good luck Sandy, let's hope for an 'easy fix'.
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Hi All, my last scans (April 24) all showed the lung tumor is stable, but more spots on the bones and 3 enlarged lymph nodes. My tumor markers were up to 240something. I had a Zometa infusion and I had a bad reaction to it, so today we started xgeva shots instead. Will get blood test results tomorrow. I asked him to lower the Afinitor to 7.5. I'm on the 10mg and the toxic cystic acne is starting up again on my head and face. Thx for asking! :-)
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After being on the A/A comb for 2 months, (10mg Afinitor/Aromasin) this is the latest(monthly) with my results. Saw my oncol. yesterday. He was very pleased and said it's nice to give good news. My cancer antigen level went from 42.5 to 39.3. According to him, my blood work looked good as well. My red blood count is borderline tho. He wasn't worried about that. He said he will delay cat scans until July since the blood work looks good. I see him monthly. After his appt. I had my every other month Xgeva shot. I am noticing a trend in taking A/A combo. During the first month after taking A/A combo for some 3 1/2 weeks, I had a case of throat sores. I stopped A/A combo for 4 days than began again on the regimen. The 2nd month, also approaching 4th week, I had a stomach virus and not sure if the A/A combo had anything to do with it or not, I stopped A/A for 3 days, then back on it again. So stay with it girls, persevere. This is all we got along with prayer and a lot of faith! PERSEVERE!
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Tina,
I think it will end soon because my tm are acting up again. But I saw my onc a few days ago and he did not change anything he will see how it goes until next visit and than make a decision. A/A drugs are great and they have done wonders for me. And they are not so bad you adjust like everything else in life it is still much better than heavy duty chemo.
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stellar, how long have you been on the A/A combo? And, what strength are you taking and daily?0 -
naturegirl2,
I have been on A/A for 9 months I take oscal vitamins with this drug and it has been kind to me with exception of one time sores all over my mouth but it cleared up within a week. I also had a rash which I did a lot of damage to it got infected and I had to cut it open to get the infection out top of my head. But that was me scratching it.
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my tumor markers are still 240something. They went up a few numbers, but still in the 240's. I did ask if I could get bumped down to the 7.5 from the 10mg, which I've been on since Sept. I didn't do so well with the xgeva shot. Did anyone know it has sorbitol in it?! I didn't either til I had a reaction and researched it! I have a sorbitol sensitivity, can't even chew one piece of gum! Oh, this isn't easy. But, I keep getting up!
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stellar, wow, 9 months! Sorry you had a bout with those darn nasty mouth sores and scalp sores that became infected.
I too had/have scalp sores due to the A/A combo and have recently learned to just leave them alone. I do rub them with my fingers rather than scratch them with my fingernails from time to time and that has helped some. stellar, I asked my oncol. in his experience how long did he see A/A combo working in keeping back progression etc. back and he said 6 months to 12 months. So you might be right in the middle. Good luck and keep us posted.sky, seems like A/A has worked for you for some 6 months? Sorry you had trouble with the Xgeva shots. I've not heard of sorbitol sensitivity and will need to research that. Will your doc give you something else in Xgeva's place? How many shots have you had? I began taking Xgeva shots in May 2013, then in Nov. got bumped down to having Xgeva shots every other month and still taking the shots. I asked my oncol. why the bump down and he said some side effects, I suppose down the line. Good luck sky. Keep us posted. Hopefully you can hold on with A/A combo treatment longer.
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Question for those who have been there.
Just came from a less than satisfactory appt. With Oncologist. Onc. Running 40 minutes late and in hurry so we probably spent a total of seven minutes together but will see her in a week, after PET scan.
Diagnosed with Mets to liver, bones and lymph nodes 14 months ago. Started on Aromasin with allergic reaction four months later. Put on Femara and two months later had 25% increase in tumor size. Faslodex added. After eight months, TM have continued to elevate and liver enzymes are elevated. Depending on PET results, the plan is to add Afinitor to Femara.
So to the questions.
If you took Faslodex prior to Afinitor did you need time off between treatments or could you start Afinitor right away? We were told one thing once and then something different this time.
Second question and opinion. If you could drive 60 miles to see Oncologist who specializes in breast cancer vs. staying closer to home and seeing Oncologist who sees all forms of Cancer and Hematology Patients which would you do. Leaning toward seeing specialist once a year but being followed closer to home but would like opinions.
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Is your onc closest to home a onc/hematologist? If so, that's where I'd hang my hat - I was treated by an onc./hematologist for my first two years and I think he was far superior to MO I have now - he actually believed there were se's!!!!!!
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Hi Crone - I drive 2 hours one way to see my Onc, who is at a leading cancer center. He specializes in MBC. I'll be 5 years this July and I was lucky enough to go to a branch office just to get my port flushed and Xgeva shot every other month that is 40 minutes away. It changes back to monthly with Onc when things get crazy, though. And I have never gotten less than 15 minutes with him; usually more like 1/2 hour. Actually, I'm so dedicated to this cancer center, that I am moving to Pittsburgh in June 2015 when my youngest graduates from high school.
Re: your other question - Afinitor takes awhile to get set up to get mailed to you, insurance approved, etc so it is usually a few week break anyway.
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When I failed Faslodex, I went right onto Afinitor. It took about 10 days to get my free trial pills (7of them--make sure you get this! They're worth about $2500 retail), and I started them right away. Your pills have to come by a delivery service like FedEx, etc. from a specialty pharmacy; you can't get them from your local pharmacy. I had a severe glitch in getting my regular prescription started with my original specialty pharmacy and had to switch to another. In the meantime I had to contact my local hospital med. donation program and ask if they had any Afinitor that they could donate to me. They did, thank heaven, and I didn't miss any doses. In fact, I was given the typical box of 28 pills, unopened of course. It was a godsend and I couldn't thank them enough! And when you think of how much that box is worth...wow!
Regarding your 2nd question--I'm thinking about doing the same thing, only I'll have to travel 3.5 hours to see the specialist I want. My local onc. Is okay, but he's going to retire soon and I think he may be losing his edge a bit. I don't think he'll mind me doing this; in fact, I'm thinking he may even appreciate it. I don't know how an onc. who deals with all cancers can keep up with everything. I do research on BC every night and I'm always asking questions about new things that he then admits he's not completely "up on." For example, a new study recently came out that someone on Afinitor who also has high blood pressure should probably not be on an ACE inhibitor due to angioedema issues. I'm on an ACE inhibitor, have been having some angioedema, and he didn't know about the issues mentioned above. I could tell he felt bad; he also apologized. Where I live, we have only 3 oncologists who are stretched to the max, so this summer, I'm off to create an extra relationship that will make sure things stay on track.
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I went straight from Faslodex to Affinitor. There was a break, but only to wait for the Afinitor to be shipped. Good luck to you.
On the Onc question, I would think that would work while you are well enough to handle the commute. I know I've been too sick to handle commute like that in the past, so that's a tough one.
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I spoke to the specialty pharmacist about the xgeva shot. He said it has 78mg of sorbitol in each shot, and he advised me not to take it again. I called my onc, now go back to Zometa with a super slow drip.
Good news, my request to drop to 7.5 mg of Afinitor was approved. I've been 8 mos on 10mg, so hopefully less side effects.
Re: traveling for onc...I think you have to choose the one you feel you have the best rapport with, it's your life. I contemplated one of the "big name" centers, and after they cancelled and resched me three times before my initial appointment, I decided against them. I'm not a number.
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Thank you for the responses. Does everyone get Afinitor thru the mail or just the first trial dose. It makes sense if you could get some free and try them before committing to a very large copay.
During my initial treatment I went through three MO's at the same center. There was a lot of politics and people kept leaving. I have been seeing this MO for several years but I left the appt. Yesterday feeling "dismissed". I had to point out to her that my liver enzymes were elevated ( thank goodness for My Chart) and the fact that I keep losing weight. I think seeing the Breast Cancer Specialist once a year and having treatments locally may work unless I could get in a clinical trial at the Center.
I have been a lurker on this sight knowing that Afinitor was probably the next step and I am trying not to be anxious about mouth sores and lung proplems. I had pneumonitis after Taxol, Radiation and CMF and since we are in the process of selling our house( hopefully) and moving , I need all the energy I can get. So I will continue to hang around and see how you all do and read how you deal with issues.
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Hi Crone, Skylotus, and everyone else,
I was fortunate in that my MO's office had a spare box of Afinitor that I was able to start on while I awaited my first shipment. I was also extremely fortunate in having Aetna insurance, as my copay for Afinitor through their specialty pharmacy is just $12.50.
I think it's a great idea for you to see a breast cancer specialist once a year. I'm a big fan of second opinions and consultations at leading cancer centers. I also think that getting a genetic analysis of your cancer tissue (mine was done through FoundationOne) can be hugely helpful. For instance, my MO had a strong hunch that A/A would be a good combo for me based on my genetic profile, and that turned out to be right on the money. I've been on A/A now for over ten months, and my latest set of scans showed my cancer confined to two small and mobile supraclavicular lymph nodes. My MO was so thrilled with my scans (and my tumor markers) that I was given approval to have surgery to remove the two errant lymph nodes, scheduled for three days from now, after which I should officially be NED for the first time since my metastatic cancer "journey" began. I've been dancing a happy dance for over a week now since I got the surgery date!
I wish that everyone here will be as lucky with A/A as I have been. That's not to say the A/A has been an easy ride. I was once again fortunate in that mouth sores have never been an issue with me. But when I started on A/A, I had all sort of other SE's--nausea, skin rashes, and the like. In fact, the SEs were so overwhelming that I asked to have my dosage dropped to 7.5 mg, after which most of the SE's resolved, although I still deal with nail issues and fatigue. Faslodex was definitely an easier regime for me. But one side benefit of the A/A for me is that I've been able to lose weight on A/A, which I tried and couldn't do on Faslodex. I've lost 30 pounds since I started on A/A, slowly and deliberately, and several people have told me I look better now than I have in years (which always reminds me of the wonderful and ridiculous saying, "It's better to look good than to feel good!" from an old Billy Crystal SNL skit).
As I said, I wish everyone here as much luck with A/A as I have had. Hugs to all, Ingrid0 -
hi Inky, awesome news! Where are the lymph nodes that you are having removed? I have 3 that are enlarged in my chest.
I didn't have the mouth sores after the first month or 2, but have almost all other SE. I get to be bumped down to 7.5 for that reason! Yay!
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Still on 10 mg and holding. Getting skin rashes....scalp problems.....nails are a mess.....sooooooo fatigued....
Having some increased pain in my back, so I'm starting to get itchy to find out if it's working.
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I hear you Romansma. Yesterday was an afinitor day.. diarrhea all morning. It just wipes me out. Then my fatigue level just drops. The fatigue is very strange too. It's like a weakness that just overwhelms you. I almost feel a little unsteady and wobbly. I was doing some yard work yesterday and had to stop and go lay down.. it's like work, activity, crash, lay down, up, activity... on and on. I also have little bumps, erruptions on my scalp, just random all over. The muscle aches I know are caused by the aromasin. So much fun. But the lab values are improving.
Good luck to every one.
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Thanks, Skylotus! My nodes are on the left side, in the hollow just above where the the clavicle meets the neck (or the supraclavicular fossa, if you want to get technical about it). They're also disturbingly close to my jugular vein, but, as I said, they're small and highly mobile, and I have a great surgeon, so I'm not worried at all about the procedure. When I started on A/A it looked like there was also some involvement in four or five abdominal lymph nodes, but they shrank so quickly after I began taking A/A that it's possible they were enlarged for some other reason, such as in response to an infection. In any case, there's no sign of them now.
And, oh yes, the big D! I remember it well. For me, that went away when I started taking a prebiotic/probiotic supplement at the advice of an oncology nurse. In fact, I still take it since I don't want to muck with success. Here's the brand I take:
http://www.amazon.com/Futurebiotics-complete-prebi...
I so wish everyone the best of luck with this regime!0 -
Hi everyone!!
I haven't been on here since my Affinitor dosage changed from 10mg to 5mg because of the mouth sores. Now I have no energy at all and have diarrhea more than ever before! I have coughing fits (at least that's what I call them). I don't have them often but I think it has everything to do with what I eat so I am really trying to watch it!
My marker had gone down just a little last month and I was only on the Affinitor for 13 days so I'm hoping it will go down even more this month!
I think of all of you on this thread and hope that you're all able to enjoy every day even with the SEs!!
Judy
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Hi everyone!!
I haven't been on here since my Affinitor dosage changed from 10mg to 5mg because of the mouth sores. Now I have no energy at all and have diarrhea more than ever before! I have coughing fits (at least that's what I call them). I don't have them often but I think it has everything to do with what I eat so I am really trying to watch it!
My marker had gone down just a little last month and I was only on the Affinitor for 13 days so I'm hoping it will go down even more this month!
I think of all of you on this thread and hope that you're all able to enjoy every day even with the SEs!!
Judy
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