Afinitor/Aromasin 2013

Romansma

Going off Affinitor for a week or two to see if it helps relieve what is going on.  MO believes it is the Afinitor causing, but thinks it's mucositis again.  I don't know, but I'm very happy to have a break and hopefully start feeling a little better.  I'm due for a scan next month, so we will know if all this was worth it.

208sandy

Romansma - Glad you got to see MO and good that you're going off the Afinitor for a couple of weeks - trust me you'll feel better almost right away - more hugs coming your way.  S.

Rosevalley

Romansma I hope you feel better. Taking a break from Afinitor is lovely got to say! The weather is so dang great right now. Wow! Here's to wishing everyone a SE tolerable day! 

208sandy

Got my results from CT Scan today - only six weeks on A/A combo and now off for a month - skin mets regressing, lung mets stable.  I am one happy camper!!!  I had to go off A/A because of extreme se's and only ever made it to 7.5 so all you ladies toughing it out (or even on "holiday"), this is one strong a-kicking drug - wish you all success - I am off treatment for the rest of the summer - see onc in a month or so to discuss what's next.

Rosevalley

Sandy that's great news! I hope everything continues to improve and your summer is wonderful! Congrads on the skin mets regressing and stable lung mets. Enjoy the great weather.  

Romansma

Great news Sandy!  Btw....I feel better.......

208sandy

Thanks Rosevalley - I am getting ready to have a great summer and hope you are too.

Romansma - good to hear you're feeling better - like I say it's great drug but a
VERY powerful one.  You're a tougher lady than I am for sure!

Romansma

I don't know about tougher.....and truthfully, I am toying with NOT going back on this one.  Or, maybe, a lower dose.  I've been on 10 mg daily the whole time.  My brain tells me things could be much worse, but I still want to feel like ME!  My MO office called yesterday to check on me and to also give me an appt for next week.  I declined the appt because I am going on an adventure with my sons this next week.  I asked her to make the appt for the following week.  Happy to be feeling a bit better.  Still very fatigued, but that's better than feeling like you have the flu all the time.  I think I need to see some proof that this drug is working.  That might make me more motivated to endure some of the SEs.  Supposed to get a scan in July.  I'm still taking the Aromasin, so I don't feel like I'm doing nothing.  Although, the Aromasin is no walk in the park either.  I've had inflamed joints all over my body that have been tough to distinguish from the bone mets.  Always happy to hear that it's a SE instead of cancer, but still hard to deal with.

208sandy

Romansma - they won't let me back on this one because of my se's (I went Diabetic and my lungs were acting up) BUT it did work (for now at least) so I'm hoping it has worked for you and if you've been on 10 mg then perhaps lowering the dose would work but meanwhile enjoy your sons and your time off - so happy you're feeling better (btw the diabetes disappeared finally as per this week's blood tests).  Hugs, S.

Rosevalley

Hi Romansma and Sandy - just got back from Onc visit and my hemoglobin continues to improve even though I ditched the Afinitor 21 days ago. I am 11.4 which is a far cry from my January reading of 5.5! So my bone marrow is regenerating. The afinitor is definitely SE city, my last glucose was 130, my swollen feet and hands are a little improved (not sure if that's all due to adding lasix) and I have more energy being off it. The weakness, icky taste, diarrhea have gone. The aromasin still causes achiness and fatigue and difficulty sleeping. I finally figured out that 5mg melatonin is worthless and 13mg works in helping you sleep. If I wake up later at 3 or 4am take more. 

So I am off afinitor for now. Labs in a month. If the numbers stay the course then stay with aromasin. I will visit here to see how you are all doing. If my H&H dip then I'll be back on A&A. I wish everyone lots of success!

Crone

if one more person says "Aren't you glad your not having to do chemo", I may become a violent person and punch them.  After taking Afinitor for ten days, the mouth sores and rash became so bad that the Afinitor has been stopped for three weeks and then scheduled to restart at 7.5 mg.   Afinitor may not fall in the Chemo category but it sure can cause some nasty side effects.   Just needed to rant a bit since I can barely talk because of the sores under my tongue. 

208sandy

Crone - I know what you're saying - chemo didn't affect me the way Afinitor did and I hate when people think Afinitor is easier - not for me either!

Romansma

I think they understand better if you refer to it as an oral chemo, sorta.  I've been feeling a little better, but rash on my leg isn't leaving and one of the mouth sores is still pretty sore.  Did I mention that I was prescribed blood pressure meds because the Affinitor is causing it to rise, along with water retention and swelling....

I feel like such a complainer.  At least if someone on Afinitor comes here, they know that someone else has experienced the same.

Woodylb

Romansma i am glad you are feeling better , enjoy your adventure with your son !  

Crone

Romansma,

Hope you are feeling better now that you are off the Afinitor.  Did you find anything to help with the mouth sores?  I am waiting for Canker Rid to arrive today.  MO gave me a viscous and lidocaine solution but it only numbs them for 5 - 10 minutes or until I have a sip of water.  

Hope that you are able to enjoy your adventure.

naturegirl2

FaerieQueen, thanks for the words of encouragement for us all with regard to your CEA up and your scans showing pretty good regression.  That is wonderful news!  I'm starting my 4th month of A/A combo, last cancer entigen level raised dramatically so ya know I'm nervous.  Cat scans scheduled in July. 

In the meantime, I am suffering with tongue sores.  I had to have emergency root canal surgery week before last then the tongue sores appeared.  I do the salt water thing and magic mouth wash, helps temporarily.  ibcmets - you mentioned Canker-Rid.  You did not mention it is an on-line product only as I searched around yesterday and could not find it.  Pharmacist researched and said to be gotten on-line only.  Can anyone offer other helpful tips for tongue sores?  I can hardly talk much less eat. 

Crone

naturegirl2, 

I ordered Canker rid from Amazon and paid an extra 3.99 to get next day delivery.  It arrived early this morning and it stings like fire when I apply it, especially to the ones on the bottom of my tongue but it is giving me relief longer than all the other things I tried.  I will let you know if they start to heal. It is the only med. I tried that said it promoted healing.  Also use a mouthwash of 6 oz. Warm water with a tsp. of baking soda and a tsp. of sea salt which  seems to help. As I am writing this, I just realized my throat is hurting, hope it's not sores there too.

Now for the rash.  It didn't seem like a big deal, most places don't itch except for the inside of my thighs and for a new place that developed at the bottom of my spine.  These are large welts, that are weeping and really itch.  They look different from the rash on other parts of my body.

All this after 10 days of the medicine.  The first mouth sore came on day three and is still getting worse, two weeks later.  I really dread going back on Afinitor in three weeks even if the dose is lowered.

I have never been really " down" during my first treatments 13 years ago but this drug has me asking myself if it is worth dealing with all  this or just stop treatment and let the cancer win.

naturegirl2

Crone,

I think I will order Canker-Rid asap from Amazon.  Thanks.  Have you used magic mouthwash?  You can get a scrip from your oncol.  It helps briefly.  I talked to my oncol. yesterday about these tongue sores.  He said I could get off of A/A for a moment, until the sores go away but I am afraid to since my cancer antigen level when up and I'll be having my cat scans mid July.  I don't know what to do but I did take my A/A last night.  If only I could get relief or healing on these tongue sores.  I'm going to order asap.  Good luck to you Crone.  I got throat sores after I think the 3rd week on A/A.  I'm now going into my 4th month on 10 mg daily.  And I do hear ya with regard to quality of life.  Man, these drugs are something but I'm afraid to think of what is next for me if they are not working, ya know?

naturegirl2

Crone,I just bought it thru Amazon.  But, I had to pay an extra $10.09 to get it shipped by Monday.  Totaled $30.04.  I don't care so long as I get relief and it works, ya know?

208sandy

Ladies - my PCP suggested a prescription hydrocortisone cream for rash I had - acne like and it worked.  I was told to start magic mouthwash at the very beginning instead of waiting till I had any sores and I continued to use it every day even though it was expensive and not covered by any insurance - I was given a prescription for a dental paste called Oracort which is supposed to be for canker sores especially the ones that are inside the lip I never had to use it but sounds like some of you might benefit from its use - it is supposed to be applied at bedtime so it will do its healing work overnight.  I never got to the 10 mgs. there was no way - you are all my heroines for sticking this out.   

tfedders

Hi all.  Haven't been on sight for a while.  Sorry to hear about the many SE from A/A.  I have been on the combo since last May.  Started with mouth sores and later did the wrap the pill in marshmallow cream.  That worked but got tired of the mess and taste.  I ordered 00 size capsules from Amazon and put both A/A in the capsule.  Never have had any more sores.  Hope this might help some of you.  I do have more leg pain as time has continued with combo.  I also get Xgeva shot.  Currently off the shot for 3 months to figure out my jaw issue.  I have had a back tooth with a root canal hurt.  Dentist has shaved it down a couple of times.  Had a body bone scan done recently and it showed progression in jaw.  Progression of what, I don't know.  That's a SE of Xgeva.  All I know is that when I am on an antibiotic, the tooth doesn't hurts.  I'm no doctor but it seems that there is an infection somewhere in the jaw.  Can't have the tooth pulled because it will not heal and more infection will result.  Do not want any infection!  I am going to a dermatologist for the acne on face and neck.  It use to only be on the scalp and I could deal with that but not so much on face.  Funny that it isn't on scalp anymore.  It must be the moving pimple.  I know its hard but I just try to find joy in each day even if it is sleeping through the night----happened once  lol.  I also need to check in more often.  I do get good advise and support from this group.  Later, Terry

Crone

I am very thankful to Teri (ibcmets) for suggesting Canker Rid for the mouth sores.  It burns a lot when I put it on the sore but after using for a day, I can see some improvement.  My DH suggested I order another bottle just to have " in case".   Hopefully this will be my only encounter with mouth sores but who knows.

naturelover

Romansma, I know what you mean about the SEs of Afinitor! My onc cut my dosage back to 5 mg. and I still have one really bad mouth sore. It was so much worse when I was on the 10 mg. dose so I am very thankful for that.

I get so tired and end up in the bed most of the day but this does happen more infrequently at least. I have days when I have spurts of energy and I can tackle a lot more than usual on those days! I am older than most of you--66--on this thread but I do babysit my grandchildren when I feel like it. I think they help me keep pushing harder each day instead of just giving up on everything!

I am so glad that you are off this med for now. Enjoy your adventure with your boys! You will certainly have more energy now that you're off Afinitor!

Judy

Anonymous

Hi, I just wanted to weigh in on the mouth sores. I got them 3 weeks in to my first month of A/A. Very sore, could not talk, on tongue, well you know.  It lasted 2 weeks and I now have been mouth sore-free for 4 weeks. rinsed with baking soda and had one horrible dose of the magic mouthwash. I even had significant dental work after the sores healed and they have not come back. Now, the fatigue is something else. I am getting really tired yet when I go to bed at night, I can not sleep. Can't win. I go for first scan next week so will find out if it has been worth it.

Jacqui

skylotus

Hmmmm.....I just posted this to the bone mets thread, but after reading some of the recent posts here, I'm thinking maybe all those symptoms are symptomatic of the side effects of A/A, and maybe I have a lung issue. I have been warm and sometimes have felt like I couldn't catch my breath. Well, either way, I'm calling Doc.

Hi All! I had a Zometa infusion the Tues before last. The Sun after, so 5 days later, I hit a wall. I've had no appetite. Zero energy. I have been so dehydrated, despite drinking a lot of water. I've been in so much pain. Bone, joint and muscle that is not relieved by ibuprofen, I've had to break into the pain pills, and my brain seemed fuzzy. It's now one week later and I am barely starting to feel human again. I am going to call Doc on Mon, probably already should've done that. Anyone else have this experience? I had the same experience, not quite as bad, last time I had a Zometa infusion. I can't take xgeva due to sorbitol allergy. I don't want to take Zometa again if this is my experience. I'll be getting scans again on the 3rd. Tumor markers jumped up 120 numbers in a month. Thanks.

Toronto_012

Hi Skylotus- Sheesh you are having a hard time... I did experience all the symptoms that you have mentioned on the A/A. At first, I could not drink enough water, drank constantly, cameled all day and peed all night! I am still experiencing the fatigue and weakness which comes with shortness of breath and some dizziness. These are the big side effects once the others start to wear off. I have been on the combo for over 4 months now and my blood levels are all back to normal and do not need to see my onc again for 8 weeks unless there is a problem. Last week I went to my MO because I have a cough with really bad flem and coughed so hard that I would vomit, but he said that it is just a virus. If you have pneumonitis- he said that basically you are so out of breath that you have to sit in a chair gasping for breath and that it is fixable. That said, you always want to check to be on the safe side. I just wanted to let you know that I felt the same as you and then things gradually started to get better. So get checked and hang in there!

Crone

Afinitor must be one potent drug.   I quit taking it a week ago and finally beginning to see slight improvement in the mouth sores but  this rash/acne is something else.  New spots are still breaking out on my body daily.  I would have thought it would be out of my system by now.  Besides looking as if I'm contagious, it itches any place that is covered by clothing.  I might start buying Cortisone ointment by the pound.  I can hardly wait for the three week break from Afinitor to be over so I can go back on this fun drug.

Anonymous

first scan since starting A/A tomorrow and hope to get result on thursday.  I need positive vibes please!

Rosevalley

Sending you tons of positive thinking that it's all worth it!! Best of luck!!

208sandy

Sending hugs and positive vibes!