Afinitor/Aromasin
Comments
-
just got back from appt. with my onc. My bone scan showed either stable or improved. When I showed her my acne she was shocked. She said I'm the only patient she has on this combo who has had this. She has prescribed a steroid shampoo, so all you acne sufferers, I'll let you know how it goes. High blood pressure a result of the afinitor.0 -
Not everyone has overwhelming SEs from this combo. I guess I'm one of the lucky ones. I've had 2 or 3 mouth sores since I started (end of March) for which I used Oracort paste. I lost my appetite and sense of taste (and with it 25 pounds, not good). I've started taking zinc supplements and my taste has returned to almost normal but my appetite is still low. I'm not losing more weight, though, so that's good. The biggie for me is the fatigue, but I seem to get that with every tx. It's like my body sees the list of possible SEs, points to where it says "fatigue" and says, "Oh, yes, I'll have that".
So to those just starting - the list of SEs is scary, and might happen to you. But it also might not.
Leah0 -
Hi Rhonda,
Thank you for sharing your story. I am also on Zoladex and I have had it 5 times since my Stage IV diagnosis. Only 1 time did it hurt and that was given by a nursing student. My advice is to have the nurse give you an ice pack and hold it to your belly for 15-20 minutes and then check to see if it feels numb. I've done this every time and it only hurt once. Hope this helps.
Liz
PS. In my story, I also forgot to mention that I have had 2 nosebleeds in 10 months but I don't know if it is from Afinitor because I have allergies) and swelling of my ankles and feet (this lasted about 1 month and then went away).0 -
Hi Granna1948,
My acne was awful, as well (it is improving now). I use the Aveeno Ultra Calming lotion on my hands and the Positively Radiant facial wash pads on my face and that helps ALOT.
Liz0 -
Wow started the Aromasin a couple weeks ago starting Afinitor by Monday as I just received my gel caps today now I am a bit more afraid as I am aching already not sure if its from the Aromasin or xgeva or the combo now With reading all this I am not sure if I want to do the Afinitor Was on Faslodex and zometa cancer woke up so to speak no progression so I'm told but awake . Will I hurt worse will the mouth sores be a problem even though I will put them in gelcaps??? I don't mean to sound like a baby but I'm taking no pain meds and Tylenol isn't really doing much wll I hurt worse you think???
Deb0 -
Thanks for the info eshinell. I hope mine starts to improve. I didn't get the steroid shampoo as it was $80!
Deb5013 don't let this discourage you. I got a good report from my bone scan, so it's worth it. Think positive!0 -
Deb, it's your choice whether to take Afinitor. There are many women on these boards who get good results with Aromasin without Afinitor. You don't HAVE to take both right out of the gate. You can stay on Aromasin for a couple of months and see how you adjust. I don't know where your mets are, but I've been on Aromasin and am on Xgeva, and the Aromasin caused terrible aches and pains, but I haven't felt that with Xgeva. I had GREAT results with Aromasin, had regression within 3 months! And I hope you get the same thing. I am on a different track than you, Tamoxifen with Afinitor, and since I had not taken Tamoxifen in the past, I started it and gave it a few months before Afinitor, which I will be starting in a couple of days. I am glad I did that. I had some terrible side effects on Tamoxifen, but it's quieted down, but I'm glad I did Tamox first so I would know which drug is to blame. Good luck to you, and all you ladies on the A/A combo.0 -
Thank You, I guess we will be starting it about the same time because I received my gelcaps yesterday and I am hoping to start it either Sunday or Monday giving myself the pep talk for a couple lol and its also nice to know that I am not completely unprotected since I am doing the Aromasin, I am so glad you have gotten good results and 3 years that gives me so much more hope. This forum is exactly what I needed all you ladies are fantastic!!! Thank You so much I no longer feel so alone in this !!! I have mets to the bone, spine, liver and at first lungs but nw they are saying suspicious nodule in lungs and that is all .
Deb0 -
Let me chime in with another A/A "long term" success story. My MO first suggested A/A as an option in the spring of 2012. After a variety of txs not working for more than six months at a time, Xeloda had gotten and kept me NED for about two years (so it could be a great option in the future) but the hand/foot SE was getting out of control.
I started Aromasin alone to give me a chance to mend, but when my quarterly PET showed a progression in the bones we added Afinitor in Oct 2012. I tried putting the pill in a marshmellow the first night, but it was a mess and I've taken 10mg after dinner and washed it down with everything from water to a nice red wine. My MO is in the camp that believes mouth sores are a sistemic reaction, not from touching the mouth. I don't know, but I've only had a couple of instances when I "think" I have a mouth sore - but I suspect it's something else since from what everyone has posted, there's no "thinking" you have a sore!
I had a rash on my scalp, under my arms, under my bra in front - all the warm, moist areas - for maybe a month, but it went away. I used baby powder some of the time and anti-itch cream others. I've dropped about 25 pounds since going on disability in January, but it's taken me from a size 14 or 16 to a 10, so at 5'2" I'm still overweight. It set off some sort of alarm my last visit in Sept. so I got the talk from the nurse, the doc and the nutritionist who stopped in to chat while I was getting my Zometa infusion. After talking about lifestyle changes with retirement, blah, blah, everyone agreed that it was okay, but I shouldn't try to lose any more.
I feel achy sometimes and I think it's from the Aromasin, but it's not too bad and can usually be handled with Tylenol. My shoulder started bothering me not long after I stoppped working and was really killing me by mid March. My MO ordered a CAT scan to see what was up and low and behold it was a rotator cuff tear! Not to be blamed on cancer at all.
I hope this combo works for years. For me, it's been pretty darn great for ONE YEAR!0 -
Deb, the mouth sores may actually be more related to the afinitor in your bloodstream rather than local effects from the pills. The best advice I have seen here, and have experienced, is to keep rinsing your mouth a LOT. I keep 3 bottles of water prepared each morning, 750 mls each (24 oz) so that is 9 glasses of water at least each day that I drink. I sip on them all day long, keeping my mouth rinsed with plain water helps some, and I was also using the salt water/sodium bicarbonate rinses at the first sign of tongue tingling. I also use a non-alcohol based mouth wash (Biotene is good, but I hate the taste, so am using Listerine Zero). And I drink a whole glass of water with the Afinitor.
I have been on the Afinitor for over 6 months and have been able to keep those sores at bay except for one time when I was traveling and not drinking water (don't like to have to stop every hour to find a bathroom when I am on a road trip!). Bottom line: try not to let fear interfere with your life! Try the pills, do your best, and if you get SEs, tell your doc, and if they are not acceptable to you for good quality of life, you can stop them! And if you don't get major SEs, it may be a very good drug to slow those cancer cells! Best wishes, may you find the courage to just jump in and try, and may you be free of fear and pain, and may you find moments of love and beauty each day.0 -
thank you Linda and Nancy for sharing your stories. I'm nervous about starting the Afinitor but your tips and personal experience are very reassuring.0 -
Thank o Linda and Nancy, appreciate all the info and find it to be very helpful and hopeful , guess I'm going to have to learn to drink water lol as Pepsi is what I primarily drink last time I had Chemo I hated an type of soda but so far all is well but we shall see how I do once start he Afinitor . TarheelMichelle we start same time same day lol . I do agree about the biotene mouthwash so will look for Listerene zero ad salt water. Aromasin alone can work ??? I am going to do both but was wondering. Again Thank you both for all your advice , info and hope.
Deb0 -
Good morning.
I recently started this regime, I was lowered from 10 mg to the 5 mg. my big complaint us sore joints....is this common?0 -
Tweety, joint problems are more likely due to the aromasin. All the AIs can cause pain in the joints. My MO says the best thing to do is exercise exercise exercise. Which I would do if I didn't have lots of other excuses right now, LOL!0 -
Hello all. Just got out of hospital. I had chemo embo through my groin into my liver to attack 2 tumors. It was amazing to watch. Pain afterwards was a bit intense but finally morphine worked. In 2 weeks I go back to have needle into liver to freeze tumors which will kill them! Hope they are dead and gone. Started back on A/A treatment today. Marshmellow time again
Bone aches not back yet but liver hurts.0 -
thank you ladies for all your support and information, makes life easier when you know what you are up for. Tfedders, that's amazing, I didn't realise you could have such treatment, I wonder why all onc's don't try to operate? Is that the gamma knife? It is now 35 days on a/a and funnily enough I still have a mouth ulcer inside my lip but it's not sore which is wonderful! I have been doing the marshmallow as well as herbal toothpaste and rinsing and it seems to be working , yay! I am feeling so much better except u have a sore elbow which has been bothering me for a month( can't roll over on it in bed) and I have an itch which comes and goes and drives me nuts in my lower back where I had radiation and on my neck at the front like I have a bite. I have never had these itches before and they come and go randomly. All in all though if this continues it is doable. Good luck to all. Love Gail0 -
I started the a/a regime sept 10th I think it was. I used the marshmallow cream to no avail...... About 2 1/2 weeks in I got two terrible mouth sores, I started having pain again, It is intolerable at times. It's lower back, legs, & right hip. I have bone mets throughout my body and nodules one the lungs. I also have been running fevers which I haven't done since the very beginning. Anyone else having fevers?? My OC just thinks they are from the cancer in general. Tonight my temp got up to 101.2 and is always accompanied by a headache.
Saw OC last Wed took me off the afinitor until mouth sores heal then told me to start back. Why not lower the dose??? Anyway yesterday was the first day in a cple of weeks that I wasn't miserable with mouth hurting. Have just been feeling run down and have had alot of pain for the last few days.
My birthday is this Friday and my BFF is coming up for the weekend. I'm so hoping I'm feeling better by then. I don't plan to start back on the afinitor until after her visit. Praying that we get to have good time w/o me being sick.
Good luck to all!0 -
Rlw1018, I started A/A 3 weeks ago. I do not have any fever but my pain became severe about 2 weeks after starting Afinitor. I have mets in pelvis. My hips hurt so much when I put weight on, I can hardly walk even with the cane. My MO sent me for an x-ray of the hip and there is no fracture. I upped the hydromorphone to 3 mg but the pain is still bad and mobility is very limited. I have the bone scan scheduled next week. Just hoping that there is no progression.0 -
hansaim, I was on Fentanyl patches and oxycodone and none of it helped the joint pain caused by Aromasin. That on top of my bone mets pain was intolerable. Why don't you ask the doctor about trying another treatment? Sounds like your hip pain is totally from Aromasin. Joints need estrogen for lubrication. That's why you are hurting. You shouldn't have to suffer. You've just been diagnosed with Stage IV. I don't know how extensive your mets are but I do know that you don't have to endure being crippled. (and if the doc tells you to stay on it for awhile and see if the pain lessens, let me just say mine only got worse.) hope you can get some less painful treatment soon.0 -
Question does anyone take there Afinitor and Aromasin at the same time? and can you?0 -
Deb, I take it at the same time. I've been stable on it since late March so I guess it's OK!
Leah0 -
Oh Leah, Thank you I was unsure but, if you can I guess I can too, btw do you take it with food or without I'm sorry for asking just wondered guess I have to many questions lol again Thank You, Deb0 -
Doing better today. Liver is a little sore but less pain meds. If you want to look at the procedure go to www.sirweb.org Go under patients and then the type of cancer. Pretty amazing. You are not opened up like in surgery. Less healing time and provides very promising results. My Oncol referred me. Hey, I'm getting tired of marshmallow, where do you get the gel tabs? Oh, back on A/A since Friday. Feel those aches coming back.0 -
Wow! could have done a search through Amazon to find empty tablets. What size works for Afinitor?0 -
I get mine from a pharmacy in Bloomington, Indiana as far as size goes not sure will know tomorrow as I purchased two different WRONG sizes haha I believe they are 0 and then 1's will tell you one looks the size of Tylenol way to small and one the size of a 500 mg Antibiotic I think either way I force one in to the biggest size washed it down with yogurt worked but getting the new size will tell you this I am told that mouth sores are not from contact with the pill itself its from the systemic distribution anyways the place I get the gel caps from will mail them to you so if you need the info just let me know.0 -
I have been on a/a since mid July , no full mouth sores just a little tingling and use MuGard from access pharmicuital.. works great.
also take calcium and d3 and monthly xgeva shots..HOwever the med afinator has made me a full type 1 insulin depend diabetic !!!!
so that cause my body to not sleep and exhaustion ..after 2 mpnths sugar is almost down and i am finally feeling better BUT this past wednesday I passed a freakin kidney stone .... so who knows what will happen ..supposed to have a pet scan this friday but think my sugar is too high ... if progression has slowed it will be worth it but am getting weary ..0 -
Thanks Deb. Those were the same sizes I was looking at LOL. They don't exactly describe the capsule size. We do have an old fashioned pharmacy near by. I might go there with my Afinitor and see if the Pharmacist can match the size up for me. I'll check back later. Terry0 -
Your welcome Terry and if you find out please let me know so I can order the right size this time haha0 -
I have been A/a since July I have experience all the side affects and they are terrible but this medicine is working on me so i deal with side affects. I have great days and sometimes bad days. But my tumor markings went from 2000 to 119 in a matter of few months. The pain disappeared and I am finally enjoying life.0 -
Stellaratov, That is great to hear and I will take the SE's if it works for me too, glad you are finally enjoying life0
