A place for those managing the ups & downs of a Stage IV/metastatic breast cancer diagnosis. Please respect that this forum is for Stage IV members only. There is a separate forum For Family and Caregivers of People with a STAGE IV Diagnosis.
Posted on: Feb 8, 2013 12:28PM
I am waiting for my pills to arrive and fearful of starting a chemo after almost seven years of anti-hormones. I immediately started looking for info on this site, and the Afinitor topic was started in Jan. 8, 2012 with 35 pages of comments to go through. Do you think it is possible to start a new topic now that this med combination has been just recently been approved by the FDA?
Posts 91 - 120 (2,446 total)
Mar 18, 2013 10:31AM lisaAB wrote:
My last (because I got rid of her) oncologist thought my rash and mouth sores were a mystery and she was going to send me to an allergist. This after only being on this new drug for a month. I knew exactly what caused this..went to GP who got me straightened out and also (I had been complaining to onc/nurses who see us more..of extreme fatigue) was diagnosed with diabetets. Needless to say extremely frustrated with last oncologist who never really checked my blood wk that I so religiously went for..she cut the dose of Afinitor in half..and then wanted me to come off drug. I switched to a new oncologist..tumour markers are very high..so will probably try a different therapy when I see her at end of this week..or perhaps will be tried back on the full dose.?? I've had wicked mouth sores and itchy skin..loss of appetite. LisaAB in rochester, ny
Mar 18, 2013 02:15PM sueco wrote:
Sad that we learn more about the side effects from others on this site than our oncologist. I know this drug is new to my oncologist for breast cancer patients (which is why she wrote down things I said) but these doctors certainly treat kidney patients who use this same drug. I did read that diabetes, rash, sores, fatigue are all the things you are experiencing, and your doctor looks at these as a "mystery." Funny I have a lack of appetite, eat less, some food just does not sound good to me, and I have not lost a pound. One side effect I have that I have not read about for Afinitor, unless someone responds to this, is that my jaws keep aching. The aching feels like a tooth ache but comes and goes and moves from one area to another. My dr. said to see a dentist who I can't get into for two weeks and to hold off on an Xgeva shot. I am not familiar with tumor markers but sometimes new meds take awhile to work. I sometimes worry too much and then read how good this new combination is for treating our breast cancer. Let us know what your doctor decides.
Mar 18, 2013 04:36PM Karen14 wrote:
LisaAB - for your Oncologist not to know that mouth ulcers are one of the main side effects of Afinitor is a little shocking. You definitely made the right decision to get rid of her.
Before starting any drug I read the patient info contained in the box and google possible side effects. I need to be as prepared as possible - it's how I cope. I'll admitt - too much information can make me a bit paranoid though!!
Sorry I haven't been back in a few days but my scan results were a little disappointing so I was a bit down. After getting the news my tmour markers dropped to 31 I was fully expecting some regression, silly me, so when I heard stable my heart sank. I know I should be happy with stable, and a time will come when I am, but I can't lie - I was extremely disappointed. There could even be some growth/new area's in my bones but they can't tell for sure as they're not comparing like for like scans. They're looking at bone and CT scans from Dec and MRI and CT from last week. MRI is showing 2 tiny lesions in my spine that either weren't picked up or weren't there in Dec. Only spoke to Regristrar as Onc at meeting but he told her to tell me he's happy with the results and he is confident I'm stable. He's back in the office tomorrow so he will explain everything then. I'm at a loss - I can't understand why he didn't do baseline MRI in Dec - it seems ridiculous. Think my Onc and I going to have a serious chat!!
Mar 18, 2013 05:17PM sueco wrote:
Karen, understand your concern. I only have PET/CT scans, but in April 2012 I had an MRI of my spine because of shoulder pain. It showed mets at T6, T10, T13, L1 that have never shown up before, and my July 2012 and Jan. 2013 PET scans never even show these MRI lesions. I get copies and always make a chart to compare. Since day one I have had a lesion at C6. The MRI never even showed it. I asked my doctor when I saw her. She looks at her laptop and said yes it showed the C6. I like her and did not question her. When I asked her about having a bone scan vs. PET she said bone scans tend to show too many false arthritic spots. MRI just picks up things other tests don't? My doctor said the PET scan is the one to go by. Main thing is being stable I feel. I guess bone mets never really go away for good. Hope you learn more when you see your onc.
Mar 18, 2013 11:44PM raro wrote:
My onc explained that with both PET and bone scans, healing bone looks exactly the same as cancerous bone. So you could have regression but not know it because the previous area would still "light up." He said that is one of the frustrating things about bone mets. I'm not sure about MRIs, though. I asked him why do the scans then?! He said it was mostly to check on progression. So a person's tumor could be shrinking and you wouldn't know because it still lights up. Weird.
Mar 22, 2013 12:21PM chefmiche wrote:
saw my onc yesterday and she wants to increase my Afinitor to 10mg every other day, and 5mg on the other day for a month and see how I do, maybe then go to 10mg every day if I tolerate it ok. I asked her about the tumors I have had in beginiing what r they doing, she said they are dormant except the new one we found in Jan. Dormant, does that mean they can wake up?
Mar 22, 2013 12:48PM LuAnnH wrote:
Sounds like A/A is working for you, it is just the dreaded side effects. I use a capsule to put the afinitor in so it does not touch my mouth and I rarely get mouth sores. Occossionally I get a few sores and someone mentioned trying oragel on them. I have bed teeth that are being worked on so I figue why not and it really does help. It burns a bit the the thing heals upand goes away so it's worth a try. Good luck I hope you have a beautiful wedding and this drug lasts a long time for you!
Mar 22, 2013 04:48PM family5 wrote:
Has anyone had any trouble with liver enzymes while on A/A? Mine apparently have been creaping up since I started this combo. My new onc (who I completely adore and TRUST) wants me to stop for a few days and then recheck, he said might have to adjust the dose. I was on 10mg every other day. Ok or the dreaded question of could this be symptom of liver mets? Right now my mets are to bone only.
Mar 22, 2013 05:27PM sueco wrote:
mkkjd60 - I seem to recall that this question of gelcaps was discussed in the afinitor/aromosin 2012 discussion. I am still finding it easy to just put the pill in a spoonfull of marshmellow cream and swallowing down with water.
family5 - so far my liver enzymes are normal but from what I have read of A/A I expect my blood work to show abnormalities in the future. My gut feeling is that this would not be liver mets. How long have you been on A/A? I only have bone mets and would think liver mets would not just suddedtly appear while you are on A/A? This A/A is just a tough chemo but still not as hard as regular chemos as this targeted med is not supposed to attack our good blood cells. That is why we don't lose our hair. I have been on it almost two months, and this week my stomach feels somewhat sick part of every day. I wonder if I will ever feel like normal.
Mar 22, 2013 05:54PM SPAMgirl wrote:
I ran across gel caps at Natural Grocer's.
Mar 22, 2013 09:04PM family5 wrote:
Mkkjd60- I found empty gelcaps at Vitamin Store, I think only had one size. I started using them to prevent the mouthsores and it didn't help. I ended up with mucositis. My onc said the gelcaps would not prevent the mouthsores. I believe if something is working stay with it! :) Anyway, after taking a little break from the Afinitor, I started back on 10mg every other day and no mouth sores! (Knock on wood! ) Good luck:)
Mar 22, 2013 09:08PM family5 wrote:
suecolo2- Thank you for the response, I'm trying to stay positive! I have been on A/A for about three months now. My onc thinks its the Afinitor and said might go down to 2.5mg. Go for bloodwork on Tues, fingers crossed!
Apr 2, 2013 07:19PM Leah_S wrote:
I started the A/A combination last Thurs. Did anyone get loss of appetite with this combo? I have lost my appetite but I don't know if it's from the drugs or not - my DH and DS both recently had stomach bugs so it could be I'm getting that. I guess I'll know in a few days.
I've been putting the pills in a piece of marshmallow (can't get marshmallow fluff or mini marshmallows easily so I cut the ones I had). So far no sores but my tongue feels a bit funny today so I swished baking soda/water in my mouth. It's either the drug or the worry that I'll get the sores!
Apr 2, 2013 09:52PM sueco wrote:
I am into week 8. I never really lost my appetite until 2-3 weeks ago, but this med will cause that. My main complaint now is that for the last few weeks my stomach never feels good. Food just does not appeal to me. I do make myself eat meals though to keep healthy, and seem to love any flavored water, ice tea, sparkly flavored water, etc.. You just need to drink a lot of liquidsl I also brush my teeth 3 or 4 times a day and rinse with Biotene and have not had mouth sores. I really think marshmellow cream is easy to stick the pill in. I just use a spoon and scoop up a spoonful and stick in the pill. My Wal-Mart only wants around a dollar for it. Best of luck with this new med. combination. It is nice keeping my hair. No one would know I am on chemo. I do enjoy a nap every afternoon.
Apr 4, 2013 11:27AM - edited Apr 4, 2013 11:41AM by chocolatesalad
Formerly known as loneplume but couldnt get my old user name back.
I've returned from my needed break(I was so sick), but am doing much better--I hope you all are doing well. Will write more later. I hope to visit the boards every once and awhile... I suppose I just needed to clear my racing mind with some retreat time.
wanted to quickly share: since being on Afinitor, my tumor marker went down from 132 to 58 (I started it February 14 2013 and got my newest tumor marker results yesterday). Today is PET scan day! (Will have to wait awhile for my cup of coffee--darn!)
Wishing healing, comfort, and joy for all
Love and best wishes.
Apr 4, 2013 12:03PM ElizaSue wrote:
I started Aromasin in Nov 2012 and then started Afinitor in March 2013 when it was approved. I have had some mouth sores and a bit of a sore throat but not too bad. Used a prescription rince which was very helpful. My Random Glucose was quite high when I had my blood done at the beginning of the week so will have to keep an eye on that for sure. (Could have been the Easter weekend food fest). I am new to this discussion but am enjoying reading the helpful information and feeling that I am not alone in this. I have mets to my femur, tibia, spine and skull. My jouney started in 1999 when I had just had my daughter...then 13 years of bliss and NED. In Dec 2011 had a pain in my hip and then it began. I am hopeful that this combination of drugs will work for me along with the Zgeva shot that I get once a month.
Apr 5, 2013 03:03PM - edited Apr 5, 2013 10:15PM by chocolatesalad
Bless you! Wishing you(and all of us) the best with treatment--whatever it may be!
My glucose has been normal, so far... I have a tendency to sugar-binge, so need to watch myself. I'm thinking of incorporating more raw foods into my diet--more nutritious that way--rather than cooked/processed.
I removed red meat from my diet and got anemia(so got an iron supplement from doc for now til i figure out the whole nutrient balancing thing). Basically since starting the A/A combo in February, I've had skin rash(now gone), mouth sores(also gone), breakouts(which have seemed to have subsided), and some hair loss. Also two bouts of pneumonia and conquering an upper respiratory infection at the moment. Also was low on potassium--seems to be ok right now.
I had a thoracentesis for my left lung last week--it took THREE times to find the spot! OUCH! Usually there is no problem and they get it on first entry... So far, the cultures from the plueral fluid are negative. I've an appt. next week with doc so will go over everything including the results from the PET I had yesterday.
Am working with a naturopathic oncologist as well who helps me stay on top of nutrition and get my blood/organs as healthy as can be. On my lab results, my liver was showing some stress, so my naturopath recommended "Tumeric Force"(curcumin), a supplement called NAC- N-acetyl cysteine, fresh organic foods like parsley, cilantro, garlic and onion to help cleanse the liver. Also he recommended using a sauna 4x weekly to help remove toxins.
In addition, I'm looking into an anti-inflammatory diet. I've got major mucus(actually have had it since August) right now which my onc attributes to my body trying to clear the cancer, etc. I notice that dairy makes it worse-so avoiding as much as i can. A couple days ago, I just had to have some vanilla ice cream--with a home-made buttery banana(potassium!) sauce. lol
I'm not giving health advice here, just sharing my treatment method--every(body) is different and needs to check with their doctors first before adding any supplements/treatments(for contraindications, safety concerns, etc.).
I'm happy that my tumor marker dropped about 80 points in 6 weeks! Down to 58, right now.
How's everyone doing with their nutrition-notice any depletions on labs?
The Afinitor really put me out of balance so am working to get myself together... Ultimately, I'm thankful. I think I can handle this treatment if I stay on top of my labs and eat a nutritious diet to counter the effects and work on having a healthy immune system(which I know means more whole foods and less refined foods!).
Love to all
Apr 5, 2013 03:11PM chocolatesalad wrote:
I'm so happy to hear you're tolerating the combo, well!:)
We both started on Valentine's Day--I remember!
I agree--staying hydrated is sooooo important!
Apr 5, 2013 05:36PM sueco wrote:
choc, glad you are back with us. Maybe your advice on eating better will assist me, but I just rarely feel like eating. My stomach seems a little sick almost every day but for some unknow reason was better for one day this week (the day I had hamburgers for dinner?). I have lost 3.5 lb. just due to not snacking These days nothing sounds good to me. I force myself to eat 3 meals a day though. Any advice? I am starting to like flavored ice tea. Friday has always been my wine nite but it sounds awful right now.
Only had one lab so far which was normal. When you say major mucus, do you mean you are blowing your nose all the time? I am keeping Kleenex in business. ha.
Funny but I fear going in a steam room or sauna because I fear I will pick up some germ as our immune system is not so great with this med. How did you find a naturopathic oncologist. Never heard of such a doc.
Heading to Florida for a week's trip tomorrow. Mentioned it to my doctor's nurse, and she said I could not be in the sun and would need to use 75 SPF. I bought 100 SPF and a long sleeved shirt I will cook in. Will have to be careful as I love to garden now that Colorado weather is warming up.
Apr 6, 2013 01:22PM - edited Apr 6, 2013 01:23PM by chocolatesalad
Good to hear from you and thaks for the welcome back!
About to leave to vet but wanted to say--
i hope you have an awesome trip! Florida sounds wonderful about now, for me too--it's snowing here!
Yes, you need your sun armor--but you can still enjoy the warmth and good times you'll be having... ahhhh:)
Will be back later to respond to more of your post!
<3 Take care!
Apr 6, 2013 04:04PM - edited Apr 6, 2013 11:32PM by chocolatesalad
Sue, I'm sorry to hear about your stomach troubles! I wish I had advice about appetite stimulation. maybe you can ask your doc--or get a referral to a nutritionist/naturopath? And I hear you on the wine-- :P. I've lost about 10 lbs since I started Afinitor(but have been trying to); I can afford to lose more(I'm good with 25lbs more). I've been eating healthier--more conscious of what I'm eating--more greens etc. Afinitor is indeed a good diet aid hehe--I don't seem as 'excited' about food-and I am a self-proclaimed foodie!
I'm sorry you have to force yourself to eat-- but it's a good thing you're conscious that you need to eat to support your health.
When you say major mucus, do you mean you are blowing your nose all the time? I am keeping Kleenex in business. ha.
Glad your lab was normal!:)
LOL I am with you--on the Kleenex/tissue/papertowels!
As far as mucus, mine is coming from my mouth... YUCK. I hadnt gone out with the hubby for a while because of it--but it seems to be getting a little better, so we got to go out to eat(as long as i dont eat too much, I dont have to hock(this is probably not helping your appetite-or anyone else's!) I didnt want to go out to eat because number 1. I was feeling unwell/phlegmy and 2. i did not want to gross out fellow diners by spitting in my napkin constantly.
Funny but I fear going in a steam room or sauna because I fear I will pick up some germ as our immune system is not so great with this med. How did you find a naturopathic oncologist. Never heard of such a doc.
We have a sauna at home(i am so grateful) so I am not worried about it. For me, a sauna is particularly useful because I am in a wheelchair and so not as active and I don't sweat enough to get the toxins out. SO I think you are fine if you get plenty of exercise and you can tolerate... and it sounds like you're keeping hydrated to flush the liver and kidneys, etc...
We have an alternative health clinic; my naturopathic oncologist specializes in nutrition for cancer patients. So, I'm grateful to have the support. However he didn't know much about Afinitor when I told him it was added to my treatment--so we're staying away from herbs because there havent been enough tests to establish contraindications...
Do you have an alternative clinic in your city, or nearby? You may be able to find a naturopath in the yellow pages or online...
My naturopathic oncologist was stressing raw organic foods... so trying to incorporate more of those... he printed out a sheet of beneficial food items and supplements(with dose instruction-so helpful!)
Have an awesome time in Florida--I've been there in the distant past and loved it! My ex-husband, son(he was 2 going on 3 then--we did the Disneyworld thing), and I, traveled from Alaska all the way to Key West by van with no A/C(had a little fan at top of van--if you stuck your face right up to it, you got a gentle cool breeze lol) --was a lifetime ago. We hit 38 states before coming back to AK. Quite an adventure!
Apr 7, 2013 12:15PM Annie4 wrote:
Started the A/A combo around 2 weeks ago. Thought I could handle this one. Very tired, but managable. Then on day 10 i got the worse mouth ulcers on the roof of my mouth, sides, tongue. Went off since Tuesday. I put the pill in the capsule, covered with marshmallow, switched with salt water and baking soda and they still came. Last night started getting the rash and my scalp itches. This is after being off if since Tuesday and it is now Sunday. I also have pain in my back, chest, but no coughing and still fine breathing. I was on 10mg. So far I really dislike this drug but have been on 6 previous chemos and starting to run out of options. I am 81/2 years out. So i guess I am going to see if the 5mg will give me the same side effects. I am 128 pounds, 5' 6"and so many times my dose needs to be adjusted downwards. I had a feeling that the 10mg would be too hard for me. I love how the onc says "oh, we can definitely manage the side effects". This has been hell.
Apr 7, 2013 12:50PM - edited Apr 7, 2013 12:54PM by chocolatesalad
I hope that you can find a dose that works for you and is tolerable. It's definitely been loaded with adverse effects for me as well. I understand, and feel for you. I also had the sores/itchies on scalp --as well as breakouts on my face and body--big hard pimples that hurt(that was initially--now have subsided).
My oncologist called me yesterday--on a Saturday--so when my hubby handed me the phone, I'm like, "What's wrong?" I had my PET on Thursday.
My onc said she's hesitant on keeping me on the Afinitor(even tho tumor markers decreased though lower lung lit up) because she's worried about my continued shortness of breath even after the thoracentesis(I had left a message that I was concerned my lung issues may be the Afinitor or pneumonia not being able to go away becuase of the Afinitor. I knew going into this Afinitor thing, that I did have a compromised/vulnerable lung and that Afinitor can cause pnuemonitis and lung damage, etc. so that was my major concern.
However, looking at the variables for shortness of breath/palpitations-- I am anemic(low iron saturation) because I had stopped eating red meat and wasn't replensihing my iron with other foods/supplements--and I know anemia can also cause shortness of breath/palpitations(have had this in the past from anemia). So it could be Afinitor or anemia-- or both. Doc wants to set me up with a pulmonologist to discuss matters--and mentioned I should get an echocardiogram. Don't know what's next but just gonna flow...
Maybe your doc will adjust your dose for you for effective and comfortable treatment. Wishing you the best.
Apr 8, 2013 05:15PM - edited Apr 8, 2013 05:28PM by chocolatesalad
I just got back from my visit with onc.
PET showed a wall in my lung/compression(may need surgery) but I'm happy that at least there is no other involvement--all clean.
Our plan is to switch me to Faslodex(with my existing Aromasin treatment) until we can establish why my lung is having problems and why I'm experiencing shortness of breath(might be Afinitor).
Will be set up with pulmonologist--and also be scheduled for an echocardiogram.
Sending love and best wishes to all
Apr 8, 2013 06:09PM raro wrote:
I haven't been on line in awhile because I've been so sick. I had what they thought was pneumonia, but fortunately my lungs were clear. Now I'm wondering if it's mono...I didn't have much of a sore throat, but I had a fever off and on for days and for the past week have been more tired than I can ever remember being. I simply CANNOT stay awake. I wasted my whole spring break sleeping and puking, and had to take off work today because I start shaking if I try to stand for any length of time.
I don't know what to do. I went to the ER a few days ago because I was worried that something might be building up in my blood (that happened to a friend of mine), plus I thought maybe now that the A/A combo has made me diabetic (grrrr...) maybe I had low/high blood sugar. Well, they couldn't really find anything except that I was dehydrated, so they sent me home. Then the ER doc called and said that one of my blood cultures grew staph, but not the second one. She thought that since my fevers have abated, it was probably some sort of contaminant.
I have been taking about 4 naps throughout the day, 2 hours each. In between, I do...nothing. Watch TV. Too tired to read, even. Anybody else have this?!? Help!!!
Apr 8, 2013 07:32PM chocolatesalad wrote:
I'm sorry you're not feelng well--I was also having a hard time on the drug--trying to find balance.
There were extended amounts of time where I felt really wiped out--just really weak-- and I didn't know what to attribute it to--there were so many variables as to what could have been causing the complete exhaustion. I did have a couple of bouts of pneumonia--and my doctor suspects I may still have some pneumonia "hiding" (and an upper resp. infection); I'm currently on Levaquin.
I know that Afinitor can make us more susceptible to infection and pneumonia, etc. Some doctors advise lower dosage or temporarily stop altogther if the infection is bad enough. I am thankful for my short run on it--it brought my tumor marker down about 80 points in 6 weeks. I'll be moving to Faslodex this week --I hope it works out for me.
I know that indeed Afinitor can cause fatigue--I think my tiredness was exacerbated by anemia and pneumonia as well.
All I can suggest is talk to your doctor about your concerns and maybe get a nutritionist or naturopathic oncologist for the diet/supplements aspect to help keep your immune system as strong as can be. Good that you went to ER for the fever! I hope you find resolution, healing, and comfort.
All the best