Afinitor/Aromasin
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Fran, my MO followed me clinically because there is a tumor mass that she measured every visit. She does not to tumor markers as she feels they are not reliable or consistent. I think she would like to do scans more often, but I have agreed to them on rare occasion - PET scan in January and one in November. The one in November showed improvement, but in the intervening 6 weeks since that scan, I developed 3 more nodules on my chest wall and the original mass doubled in size, so in some ways, I think the scans can give me a false sense of security, as the last one did. I mean, geez, good scan, then a month later whammo!
As far as how long people stay on this drug, I think they stay on it for as long as it works, and I think it has worked for over a year for some folks, and some got no response at all. As with everything else we have experienced, it is a crap shoot. I think at some time in the future, they will find out why some cells respond to some drugs and not others, and they will be able to treat each person for THEIR cancer with a specific drug rather than taking a shotgun approach.
And as you say, it is a marathon, not a sprint, and it takes a while for these drugs to actually begin working and a few days or a week is probably not going to make a huge difference. Although I WOULD encourage you to let your MO know!
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Hello All----Just real thankful tonight. Looking forward to my freshman son coming home from college tomorrow. He's my one and only. Trying to prepare for family Christmas at my house on the 26th. Trying new recipes which will be fun. Had my MRI of liver done today. Hopeful that the chemo embo worked and tumors are dead. How do you handle family that want you to fight with insurance when the deny procedure? I try to say what I believe and that I don't have the time or energy to handle things out of my control. I know it is hard for them to accept that it is my journey. I also try to remember that they have their journey as well. Thankful for a full day of activity. Only issue I'm dealing with is swollen feet/ankles. May try a diuretic tomorrow. Best wishes to all my sisters. I love how positive we are on this site. Terry in Ohio
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Well I had appt with lung specialist yesterday and he shocked me by showing me the ct I had and how I had extensive lung damage in just 3 months to both lungs. I don't know why my onc didn't show me how bad it was , perhaps because I had taken my son with me, who knows?
Specialist could not decide without investigation if it was from infinitor or a bug infecting my lungs.so after consultation with another specialist was decided to do a bronchoscopy to take pictures of my lungs.
The anesthetist came to see me last night to say he hated saying it but would be a very unpleasant experience for me as would be limited sedation.
Well when I arrived at theatre the other anesthetist came to see me and told me that they had decided I could have no sedation at all because they had a fine line where I could fall asleep and either stop breathing or have a heart attack!
Sparing you the details, it was the worst experience I could ever have imagined and I will never allow that to be done again.
It looks to be the infinitor, which I had no doubt it was and now I am on steroids for 20 days to try and clear all the scarring of my lungs and the infection.
Home now and very sore and sorry for myself, but was told I should feel better after some of the steroids, I hope so.
I happened to be the one in five that have this reaction I was told, but I suspect it would be higher than this. I feel really cut that I had good lungs 3 months ago and now this. So please be wary if you find yourself becoming increasingly breathless before you reach this stage as mine had doubled in severity in 4 weeks from my previous scan. Love Gail
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hello everyone
my Mother is going to start with A/A combo this week. can you please guide me about the precautions to be taken careof.
Also while surfing on another site i read views of some people saying that A/a combo enhanced mets into their liver. Does anybody out here has faced any such problem???
also please guide about how to avoid mouth sores.
thanks in advance
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Aangell,welcome to the forum and hope your mum does well on the combo, if you read through this thread all your questions will be answered. I have not heard of the liver, but I have a spot that was not there before, so I am concerned it could be true. Regards. Gail
Ps can you please tell me what the other site was thank you.
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you can check it on the following link https://www.inspire.com/warrior1/journal/afinitor-aromasin-my-experience/
If possible can you please detail me about use of marshmellow cream , butter or magic syrup mentioned herein for swalloing Afinitor. thanks
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Aangell,
I've been on AA combo since Oct. I did get mouth sores and now swallow pills encased in small marshmallows. I heard some use the marshmallow cream. I also got an over the counter mouthwash from Colgate called Peroxyl. I also heard taking probiotics may help to eliminate mouth sores. The magic mouthwash I got from my pharmacy had lidocaine but only worked for about 15 min.
I won't find out until Feb how I'm doing on this.
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Officially leaving all you ladies for other meds. Afinitor is no longer working, so MO took me off both that AND the AI, I should be feeling better soon! But next up is Xeloda - not sure I am up for it, but have a scan and a week to decide. Best wishes to all here - I got just over the average in "disease-free progression" - average is 9 months, I got 10 - and I was never "disease-free" to begin with! In any case, it wasn't so bad overall, but I have been told by my MO that Xeloda may be easier, except for a couple SEs that are "manageable." Hugs to all of you, and best wishes!
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thanks dear but i couldn't understand the mouthwash part that how it helped for only 15 mts??
I am really scared for my mother especially after reading such long list of possible side effects, don't know what to do ??
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Goodluck a linda, I am in the same situation also, may you have a wonderful result with your new treatment and get a lot of time from it.
Aangell, knowledge is power and I am so grateful for the information shared here, you can only help your mother with it. I had terrible mouth ulcers and have not had one since I used a soft toothbrush, herbal toothpaste with no sulphur laureate and biotene mouthwash. Ps and tablet wrapped in a marshmallow. Thank you for the link, it's great. Love Gail
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Gail thanks a lot for replying...
can u pls tell what u meant by Ps in last line.
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just means post scrip ( that I forgot something and edited to ad it)
Home and after only my 4th steroid I am breathing soooo much better already. I walked all around the shops today and my feet suffered more than my breathing, my son couldn't beleeve how well I went. So exciting, I only hope they can reverse the lung infection and scarring, what a wonderful Christmas present that would be. I am watching The Carols in The Domain in Sydney and it is beautiful, had a performance by Kelly Clarkson from the USA and she was wonderful as well as all our wonderful ex pats from around the world home for Christmas. Such a beautiful time of the year, Merry Christmas all, hope it is as happy as possible. Love Gail xxxx
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Gail thanks for replying, wishing you a very Merry Christmas and best of health.
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my mother just had first tablet of afinitor, i just pray it works without much problems..
just confused as the medicine supplier told mouth sores occur after 15 days of starting the medicine. Is it true???
Please guide apart from grape fruit ,peroxide, iodine, or thyme what other things are to be avoided and important points and precautions to be taken care of??
Also like chemo is there any need to avoid raw fruits , veggies etc
Regards
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Hi, Everybody. I haven't posted much lately. Christmas is about to do me in. A lot of family are here, which is wonderful, but I'm really tired. Linda and Gail, I'm sorry you've had it so rough. Afinitor is really tough. I've had so much trouble with itching, no matter what I've tried. My skin is covered with sores from scratching the rash. No infection yet, but I'm worried about it. I'm using Eucerin, hydrocortisone cream, and taking Claritin. I started Prednisone a couple of days ago, too. I think it is helping a little, but I had hoped for quicker and greater relief. I also have 3 mouth sores now--not too bad, but worrying. Also, I'm gaining weight! I know it's crazy to care about weight gain at this point, but I do. I've gained 10 pounds in the past few months. I'm still at an ok weight, but won't be for long if this keeps up. I'm almost looking forward to my next drug, which I think will be Xeloda. Does anybody know if you lose your hair with that? Oh, but some good news!! My tumor markers are down--only a little, but the MO's office called to tell me and said it was a good thing that they are trending down. I can still feel the mass in my abdomen, but maybe it's good news as long as it isn't getting bigger.
Merry Christmas to you all, and let's all ask Santa for a little relief.
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HELLO LADIES
WHERE ARE YOU ALL???
AWAITING YOUR REPLY SINCE TWO DAYS.PLS HELP
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Aangell,
Not sure what you are asking. Lots of replies for things to take while on Affinitor have been posted. I did read from someone on another thread that putting honey on mouth sore eliminated pain, but as mentioned maybe taking probiotics will eliminate getting them.
I did 8 months of chemo and found not to eat grapefruit with chemo due to the enzymes. Always ask the onc about additional things taken to make sure it does not interfere with medicine given. I did B6 & B12 for neuropathy which helped a lot.
Nice that you want to be prepared for your Mom.
Terri
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Terri
Thanks for replying
My mother has started up with Afinitor 10mg and has taken three tablets. With God's Grace she is doing fine and hasn't felt uncomfortable during these three days.
I was confused because my medical supplier of AFinitor told me that mouth sores don't happen immediately but after 15 days of starting the medicine. Is it true??? Do side effects of Afinitor start showing up after some time???
Regards
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Aangell,
I think my mouth sores showed up about 1 week after I started. I've been on them since Oct & have not gotten any more sores.
Terri
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Aangell, I don't remember when my itching started, but it was pretty soon after starting Afinitor--maybe a week. My mouth sores didn't come until the third month, and there are only a few so far.
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Terri , Mary
Thanks a lot for replying.
Wishing you all Merry Christmas and best of good health.
Aangell
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who is this working for? I've been on it for two months consistent, tried it the first two weeks ans got six dime-sized mouth sores, lost eight pounds, was in terrible pain on the 10mg. Had to drop down to 5mg. Anyone have good results on 5mg. I'm worried I'm not at the full dose but can't tolerate higher than five. Even the 7.5 was too harsh. My tumor markers are still rising but the rate at which they are rising is slowing...don't have scans until mid January so that I can be consistently on the meds for three months. Was previously on Xeloda for 9 months, liver lesions were responding but bone mets were increasing their metabolic activity. I also have joint pain and am thinking it must be a side effect of the afinitor. I've also noticed a wheezing in my lungs and after reading these boards I am freaking out...
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Jess, be vigilant with having the wheezing, and go to your gp if you cant See your onc soon, it can damage your lungs very quickly. I am freaking out myself as i don't know whether i have overdone it as was feeling ok and did a lot of shopping etc for Christmas and now i am in such pain across my back. Don't Know if its the lungs or bone mets but i have not been in this pain before and know my markers were extremely high. I am going on a cruise 2/2 and want to be feeling good for that . I just Want. Something. That works! Excuse writing i have. A new. Phone. Love g
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I have been on Afinitor for 8 months now. The first 4 months I was also on Aromasin and 10 mil of Afinitor. Tumor markers started going up like crazy. Had scans and they did not look that bad so my doctor took me off Aromasin and put me on Tamoxifen. Markers are going down every month, down over 100 so far. My Afinitor was reduced to 7.5 mil. I have mouth sores that come and go and itching but feel better since the Aromasin was removed. My weight has stabilized at 15 lbs. weight loss. Taste buds are shot, especially for anything containing sugar. No side effects from Tamoxifen. I was on it 22 years ago when first diagnosed with Stage 1.It kept me cancer free for 17 years. Hope this info helps someone. I would like to get off the Afinitor because of the cost and only remain on Tamoxifen. Doctor isn't sure that would be enough protection.
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i was just at afinitor website. has anyone been able to use copay assist card?
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HWALTER, I have been on the A/A combo for 21 months. The last 12 months I have felt terrific except for fatigue and some minor side effects. I decided to combat the fatigue by changing my work schedule to part time, and it is perfect. I have enough energy for work and for me time. Take care.
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AANGELL, not everyone gets mouth sores. That is just one possible side effect. For me the side effects come and go. One month my joints ache; the next they don't. The same has happened with other side effects. Fatigue has been the only constant. Just wait and see what happens.
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i started taking my afinitor. told hubby about drug. he had questions that i couldnt answer. i went to afinitor website
so is this little pill chemo? it kills bad cells, but also some good ones
i think my pill just says afinitor. what is this combo thing with aromosin?
the blister packs? is it okay to cut out weeks worth for pill box?
my mouth is allready getting dry after two pills( i am allreadyin misery from some infection thats caused pluerasy inmy lung) hurts like hell to take deep breath. it is gettingbetter.
i plan on getting the bioten stuff.and keeping salt water around for gargling
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Fran, I don't think you're supposed to cut out the pills from the blister pack until it's time to use them. I think the foil keeps moisture out or something. I finally found something to control the itching--Prednisone. The problem is that the prednisone has SE's! I can't sleep and I'm retaining water. It's interesting that so many of you are losing weight with A/A. I've gained 10 pounds in 3 months! I'm really bummed about that. I don't normally gain weight, either. My sense of taste hasn't changed and I've only had a few mouth sores. I've been on 5mg the whole time. My markers have gone down a little.
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Greetings Ladies, I'm joining the A/A train and this discussion. Xeloda worked for me for 9 months but a strong hint of progression indicated it was time to move on. I've been doing the new combo for a month and been doing okay. I've read most of the thread but lost track of all the mouthwash possibilities...
There are two prescription mouthwashes that were given to me from the get go. The first is a benzodamine hydrochloride rinse which is helpful for small outbreaks and seems mostly to numb things for short periods of time. It's helpful before eating or when I'm paying more attention to my mouth than life.
But my fix is the second one. Steroids seem to be a big gun in A/A side effects. The rinse is a compounded 1 mg/ ml dexamethasone oral mouthwash. It's has eliminated evil outbreaks in under two days and is now the one I use at the first sign of trouble with excellent results ( sores disappear). It's currently being tested as a preventative and early reports suggest it eliminates the problem entirely. (I'm taking this from an oncology discussion on one of the San Antonio reviews). I'm steroid cautious so wait for the tingling/sore spots to start before I use it. Plus my taste seems worse with it (currently livable level) and my mouth really dry. It's likely already been noted here but putting it out as a VIP option for you ladies that are suffering. Runs about $40.00 here in Canada if not covered.
Also mentioned early on in this thread is that the diabetic med Metformin is a good pair with Affinitor in terms of anti cancer benefits (they work together) and good for diabetic side effects. It's a miserable drug for digestion s/e and so you have to patience to find a dose and schedule that works. Early hints are ( evidence not all there yet - in the works in other oncology applications) promising.
Mary, be alert to the way this drug pushes towards diabetic responses. There may something like that at the bottom of the new weight problems.
Anyway I'm doing okay so far. My biggest defence for fatigue is quality sleep at night. I did a long run on Femara and discovered that I had lost the ability to hit deep sleep and so fatigue just about broke me. I'll use a sleep med ( there are many options) now to make sure that I get max value from the sleep I do get. So now making it well enough with 30 minute meditation/snooze mid afternoon. I switch the sleep aids around as then tend to lose effectiveness if used too regularly.
Like xeloda the effects of this drug seems to show up over the first several months that become more intermittent over time. So we'll see....scans in 4 weeks here.
Wishing you ladies joy for the rest of the holiday season,
Sophie
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