Hi everyone
I just completed 1 month of Truqap. I had to stop treatment due to a cough and a horrible rash. I had to stay in the ER for 24 hours due to the rash.
I am now moving on to Exemestane and Afinitor. I would so appreciate any experience that anyone has had on these 2 meds. I’m mostly interested in the side effects. I’m very nervous since my husband had to call 911 for me last week.
Thank you for listening.
Lori
hi Lori,
I can’t help really but I’m about to start these meds too, bit nervous about side effects but seems not everyone gets them. I’ve been prescribed a mouthwash and anti nausea meds too - have you?
I won’t be starting until the end of the week as they want to review bloodwork first.
Good luck and stay in touch
Lauren
Hi I started this combination of drugs last August
I experience terrible mouth ulcers every month, I use the mouth wash, but it’s not that good tbh
I have developed type 2 diabetes also as the afinator raises glucose and cholesterol levels
This has been maintained by using metformin tablets
I have swelling of the hand and arm also
Initially the drugs caused considerable shrinkage in lesions in liver and lesion in breast and bone were stable but I have had a med break for 7 weeks as I had inflammation of the lungs and the lesion has grown by 10mm . I am to have another CT scan this month , as we are not sure if it was the med break or drugs not working . So this hopefully will let us know what’s happening
I can put up with the side effects if it works on the cancers . Each issue has been dealt with promptly
I wish you lots of luck and hope all goes well
I agree. If it is working, I can tolerate the issues. It is difficult, but I try to weigh the qol regarding harsher drugs like chemo/iv/pills. Glad to know I am not alone on that thought.
I started those two drugs in 2016. I didn’t get mouth ulcers and I didn’t use the mouthwash. I’m not saying that is a good idea but it’s what I decided on. I used the mouthwashes etc for the first few days but looking in my mouth 9 times a day was too much for me. Ulcers can start up to six weeks after commencing the drugs though.
What I did have were a multitude of smaller problems but most didn’t impact me much. I recall I had bleeding from the nose but it wasn’t gushing or anything like that. I just noticed blood on the tissue when I blew my nose thinking it was runny. I had outbreaks of skin lesions even under my toe nails but a topical ointment sorted most of them out pretty quickly. And I had swollen feet and ankles. The bigger problem I had was with the taste of food. Everything tasted bitter and I gradually stopped eating and drinking anything I usually liked or even loved. Chocolate was gross, espresso coffee was undrinkable and in the end I developed anorexia which is a known side effect. I ate a small piece of rump steak every second day and I sometimes drank green tea. The oncologist warned me Afinitor has a high drop out rate most likely because of the problems with following anything like the usual diet. I was overweight so I had weight to lose but over ten months I lost close to 40 kilos. I found some of it when I stopped Afinitor. The reason I stopped Afinitor was my liver readings. The numbers went sky high and a two week break wasn’t enough to get them back to normal so I was taken off Afinitor. Liver inflammation which is what I was dealing with is a rare side effect and it was most likely the reason for my swollen feet and ankles. Once I stopped Afinitor I had no further issues with eating and drinking.
I stayed on Exemestane as the doctor thought I could get a couple of years out of Exemestane alone. She really believed in the Afinitor/Exemestane combo as it trialled well, doubling PFS time although the latest results put PFS much higher.
I’ve been on Exemestane ever since. Although I had some progression March 2023, a scan in June 2023 showed that the new affected abdominal node was no longer growing but shrinking and the December scan confirmed it is still shrinking.
I hope you both do as well on the drugs as I have.
All the best
Kerry
Thank you so much for information really help !!
Dear Jhshl512-----What a shame that you were not able to use Truqap. I am assuming that it was chosen because it was a targeted therapy for you. What dose did you begin with? My oncologist will be starting me on a half dose and hopefully it will be enough. It pains me to see some oncologists beginning with a full dosage of those powerful drugs, making their patients suffer before they reduce them down. Why not start conservatively?
I will not be starting Truqap until and unless the extremely strong chemo sessions get my blood to numbers acceptable to her. I'm struggling, believe me!
I am on TRUQAP. I started out with 200 and it gave me continuous diarrhea. I took 2 weeks off and am now on 160. Not as much diarrhea issues. Good luck. Reenie
Rbeth-----How is the Truqap doing in reducing the cancer? Any movement? I would love to read that it is a miracle drug. The way I feel with this heavy duty chemo is really not good. I so want to get onto the Truqap..
I started Exemestane and Affonator a couple of months ago after my previous line of treatment stopped working. The biggest side effects for me include ongoing fatigue and diarrhea that started out pretty awful but has gotten much less intense over the last month (whew). I also have some dry itchy skin and some hot flashes. I had a couple of mouth sores but the prescribed mouthwash cleared those up. If an upcoming scan shows this drug combo is working I'll take the side effects.
I use Olive oil, extra virgen on my skin after a shower with essential lemon oil and never itched since. Doc prescribed a cream, but had all horrible ingredients, which floored me.
Thanks for that idea. I've found an over the counter skin cream that is helping but will keep your suggestion in mind. I also might try aloe vera gel as I've used that in the past for skin irritation.
Hi Lori. I'm sorry of the recent adverse effects you had with Truqap. I'm sure it is frustrating to have had to end a new treatment so soon. Let's hope this one is better for you. I started on Afinitor 10mg in March last year and experienced GI upset, diarrhea and loss of appetite(very strange for me) and persevered for 1 month but loss about 30 pounds. It was not a QOL for me so I stopped and took a month off to allow my body time to heal. After a month I started back at the 5mg dose and had minimal issues for 2 months. I then had my regular scans that showed stable so I asked my oncologist to increase my dose up to 7.5mg per day along with Exemestane. I had another series of scans after 3 months and again they were stable. I told my oncologist I was willing to go up to the 10mg dose again but she said that the 7.5mg dose was working so lets leave things well alone. Now I basically have no side effects at all. I did initially take Imodium 2mg twice a day prophylactically for the first 2 months when I restarted but did not have any issues so I stopped it. I never developed mouth sores as I place my tablets in an empty gelatin capsule and swallow it that way. With doing that the actual drug doesn't get absorbed into my upper GI tract and therefore avoid the mouth sores and the other GI issues. I'm leaving for a beach vacation soon and will have my next set of scans(every 3 months) in Mid May. I am hoping that I am still stable and can continue taking this combination long-term. Good luck.
Thank you for your reply and advice. I will definitely look into those glycerin tablets. Does the pharmacy carry them? If not where do I get them? Thank you again and wishing you the best
Lori
Hi Lori. I meant to say gelatin capsules. I just bought a large bag of them off Amazon. Here's the ones that I bought. Good luck.
Capsuline Size 0 Empty Gelatin Capsules, Clear - 1000 Count
keep a watch. Last year afinitor/ everestine gave me a horrible allergy that put me out of commission for 9 months. Rash,swelling limbs mouth sores. Hand and foot etc. I was traveling to Florida and I didn’t report it for a while.
Hi Lori, I was on Exemestane for a few years and mostly had no side effects except possibly a bit of diarrhea which Imodium controlled. Good luck!
Thank you for your positive post. Although I need to hear the negative ones also.
All the best to you
Hi there, I was on Afinitor with Tamoxifen last year. I was only it for 5 months though It worked a bit initially but then it started not working. December scans confirmed my liver mets had progressed and bloodwork was declining too.
Symptom-wise it was actually ok for me. I had mild mouth sores at the start but the mouth wash healed it pretty quickly, and after a while I stopped the need for the mouth wash altogether. I did make sure to brush my teeth after eating, and might have rinsed my mouth with a salt-water solution if I felt an ulcer twinge starting up. Had some fatigue perhaps as well but nothing awful. Can't recall my dose, either either 5 or 7.5 mg. I know it's scary starting new meds, and it was unfortunate you had that recent bad experience. I do believe though that we need to try to stay optimistic that the drugs will be ok, and not harm us. All the best with it!
I was on Exemestane and Zometa for approximately 8 years. I had some fatigue but tolerated both.
Wow! 8 years. Good for you and thank you for letting me know
Indeed a holy wow. Goodness me, 8 years is just fantastic. What dose were you on if you don't mind sharing. Hoping you are still stable. Blessings
Exemestane 25mg and Zometa 4mg intravenous. I did have intravenous fluids after Zometa and I took Claritin a few days before and after Zometa.
Thank you for your reply. I see that you are not on it anymore. How are you doing? Are you still on meds? I was curious about everolimus as some have had terrible bone pain or other side effects and I was wondering about afinitor dose. Blessings
After exemestane I was on Ibrance and it made me feel like a zombie. I took Kisqali which damaged my lungs. I just found out that the breast cancer had metastasized to my stomach. I am on Orserdu. My oncologist is having the polyps tested to find best treatment. This did not show on PETSCAN or CT scan. Found after endoscopy from polyps biopsy. I am 23 yrs out from first diagnosis.
Oh my goodness. Besides being 23 years from original dx, congrats for the time. I am sorry to hear about the issues you have faced on these meds. Sounds like you are in good hands then to have the polyps tested. Thank you so much for letting us know that this issue did not show up on the pet or ct scan. We are all here for you too. 
EVEROLIMUS & EXEMESTANE
Afinator and Exemestane
Afinitor and faslodex
