Afinitor/Aromasin
Comments
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Bluegirl...Verzenio is endocrine therapy I believe. I failed Ibrance/let/Faslodex early on my 1st treatment after 4 months..but sometimes when we go to chemo's...then circle back to endocrine it can sometimes work...so thats what we are trying but right now my bone mets are spreading in my spine...I know this because I have pain I have never had
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So far Afinitor/Exemestane seem to be going ok, notice hair thinning and some stiffness in hands. The pain in forearm is gone for the time being and might have been related to the swelling. The swelling might have gone down because of a tight compression wrap worn for a few days or the blood thinner I was just put on (Friday) or maybe both. Friday I had an angio-thorax CT because of increasing shortness of breath. Well, they sucked out 1 1/2 liters of fluid from chest cavity (not lungs), put me on blood thinner because clots suspected. Saturday I had removed wrap and noticed swelling and redness had decreased. Today (Monday), looks even better. Will have a followup ultra sound to check for clots. So maybe clots have been part of the problem and exacerbated the lymphedema? If there are clots, I wonder how long they have been there.
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BGRS- Glad to hear you are feeling better. I hope they find and resolve the issue, and yes wondering if there have been some clotting issues. Fluid in chest cavity must have been frightening. Happy to hear you are tolerating the AA therapy amd I hope it works for you!!
I am not on this therapy yet, but maybe my next one so watching the thread
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Hi Friends....haven't posted in a while so I thought I would give a quick update. Still "stable" with bone mets only after dx in July 2015. Have been on Affinitor and Faslodex for about 29 months now. The affinitor is delivered to my home monthly and the dosage is 7.5 mg. Have had a few bumps in the road. Recently spent 8 days in the hospital due to fluid retention. Literally my entire body was swollen, but especially my left arm which had never happened before. I also have a heart condition (leaky valve) believed to have been caused by "red devil" chemo back in 2001 which they attributed to the swelling. I am now taking Lasix on a regular basis but have to be careful since it affects kidney function (and I only have one kidney...other was removed at the tender age of 6 due to Wilm's tumor cancer). A few months ago, I had an ablation to a tumor is my iliac bone, shortly followed by cementing of 10 fractures in my sacrum...yes 10! A few months ago, I also had a reaction to the 2nd faslodex shot as it was being injected. Rapid response was called in (oxygen level dropped to 78) and I couldn't stop coughing. They gave me a fast injection of benadryl and some other meds and all was well after an hour had passed. Now I pre-med before injections with steroids, benadryl and a type of reflux pill. That was my first ever reaction in 5 years; oddly, my MO said that 4 other patients who were long time patients on Faslodex had experienced the same thing within the past 3 months......
Have had a few blood transfusions due to consistently low hemoglobin. Most other blood counts stay fairly stable.
I think that's it in a nutshell. These treatments are working for me and thankfully those awful side affects at the beginning are long gone. Still fight fatigue every day though and now my husband just go dx with lung mets to spine. He is virtually unable to walk at this time. Finished with radiation and starts chemo tomorrow. Now is not the time for me to have any sort of progression, so if you are a praying person, please keep us in your prayers. Will touch base again soon.
My best regards and prayers to each of you!
Angie
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masonsmawmaw - I hope the AA/AFcontinues for work for you and sending prayers for you and your husband. A lot to deal with. May the Lord watch over you both.
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Masonsmawmaw- I wondered how you were doing. Great long response to AA or I guess AF. So weird about the reaction to Faslodex after all these years. sounds scary. well- you sound like you have had a time of it and DH also. Hope it works a good long time- it was my favorite treatment of all.
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Hi everyone, I don't post often, there doesn't seem to be a thread that I belong to! This A/A is so quiet. But here goes. I was diagnosed 7/17. Currently have bone, lung, breast mets. In the last 8 weeks a bumpy rash has started growing over my breast, chest, arm pits above and below my breast. I'm on no treatment. Onc said its cancer. For 2 years I had a silver dollar size rash on my breast, all crusted over over and gave me no problems. Then one morning I woke up with a huge hole in that patch bleeding blood. I brought a compression bandage for ulcers to cover. It covered the cancer and about 2 more inches where there was no cancer. When I changed it two days later, the skin that was clear w as red and all bumpy. Read package, it had silicone in it, so I thought silcone allergy. So started covering with just gauge. Meanwhile this new rash has spread over most of my chest and is painful.
Also, the A/A worked for 3 months, some shrinkage,
no side effects, then I started having severe pain in all my joints and muscles about a 8. I figured this was from the A/A, I messaged onc and told them I quit A/A on the 24th of Feb thinking those pains would go away. Onc sent script for hydrocodon. It does nothing. Got right into the ONC only he was on another vacation, NP ordered script for Fentanyl and it DIDN'T work. She got me in in 4 days to see ONC. He said go back on A/A, is he crazy? That drug was letting cancer spread all over my body. Had Ct scan and I think it it read that cancer was in my lymph nodes. ONC never confirmed. He wanted me to go on Havalan. He said that was the only TX he had left to offer as all the other chemos would be too harsh for me. We scheduled my first infusion. I was all ready and then I skipped the apt. Why?
I have no confidence this would work either. Been on all 5/6 TX's none worked except Taxal which he took me off because of the narpathty in my leg. No idea what's driving this cancer.
I have a apt this Mon and am seriously considering tell him no more. Even if the Navalin work, it will stop and I will be right back where I am right now.
My Tm is just 147 so I don't have alot of cancer in my body yet, I feel half dead. Can't eat, no interest in anything, just want to sleep and for this nightmear to be over.
Totally confused
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snooky1954- I wonder if it’s time for you to get a second opinion. Do you have a good cancer center with specialists within driving distance? I am not judging your MO, but from the start I have always had a highly experienced breast cancer specialist as a second opinion for me. He gets all my scans and all my reports for review. I have not yet gotten into a real tricky situation but it helps to have that second opinion especially when things get more complex. I have been so grateful to have him voice his perspectives. Once a year I also have a general telehealth visit with him. Those will increase when/if I need him more.
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Also, Snooky, have you had a genomic workup? Like Foundation One or Tempus or Caris? I don't know why your MO is telling you this is the last treatment for you -- it seems to me that you haven't been on everything that's out there. (Look at Bestbird's book.) If your doctor would take a biopsy of your current cancer, that might be do-able.
Also, what about asking your doc about clinical trials? There are other things out there. Read the clinical trials thread (are you on a clinical trial?) to get some ideas.
I'm with Hope -- I'd be looking for another oncologist, or even a second opinion oncologist.
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Hope and Bev, I can't thank the both of you for your replies. At the last apt. the Onc said something about testing and started scribbling notes
But the best thing was, my eldest son showed up yesterday afternoon and said we're going for a ride. He had made an apr for me with my primary (who I trust and adore) Wow, that lady gets things done! She signed me up for Pallative Care, Home Health Services and a couple of other things. She said you live alone, you're depressed you can't make healthy deicions. She also wrote a script for Pain Med. She said call her day or night, or just drop into the office to talk. She said you've been doing this all alone for 4 yrs., it has to stop.
So, you guys, I have hope again! My deepest thank yous.
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snooky1954 - bless your son! So great that you were able to talk to someone you can trust who cares about you and getting you the care you need. I hope she can refer you or help you find another oncologist that will care as much. Keeping you in my prayers
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Snooky1954 I am so pleased that your wonderful son rode in like a knight in shining armour and took you to see your primary. This is such a tough path we tread and to do it alone must be unbearable particularly with COVID adding to our woes. To have anyone in your corner is a blessing but a caring doctor with a plan will make such a difference. Well done and remember you are not alone as we are also here foryou.
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Hugs to you Snooky, glad your son and primary are on top of things. My cancer (R-axilla) seemed to be shrinking with Ibrance/Arimidex, took for 15 months. My lymphedema in R-arm started getting worse. In Dec, rash on chest. Oncologist said she thought it was the cancer and ordered PET, which showed cancer had metatstasized in skin all over via lymph. Fortunately nothing found in any of the organs, but I am very concerned that it will. Was taken off of Ibrance/Arimidex and now just take Afinitor/Exemestane. ER+ 85%, . Slightly PDL1, so there might be an immunotherapy option. Get occasional very bad pain very late at night, usually in forearm, sometimes in tricep area, which is probably from lymphedema. Since at this time it is only occasional, and only at night, I said No to the painkiller offered. Was trying to get second opinion on treatment options, but got very frustrated. Started process with MD Anderson, but they indicated an appointment might be a waste of time since they would not second guess (but isn't that what a 2nd opinion is?) and that since I had just started a new treatment, that the new treatment had to fail before they would suggest something else.
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BGRS- the comments from MDACC sound a bit off to me. Every patient has the right to an opinion from another doctor/specialist. You should be sharing all test results and reports. Their job would be another pair of eyes to review and concur or question or request additional tests. If your MO is good, they would welcome a second opinion. I realize there are egos, but your MO should want the best for you. I think you need to speak to someone else at MDACC.
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Hi Snooky. I don't post too much anymore but I do follow a few threads and saw your name. My MO told me I will probably go to this combo when I progress which hopefully won't be for a long time. I'm sorry to hear you are having a difficult time. I hope things are getting better for you.
Edited to add: Are you low her2? If so, you might want to check into getting enhertu via compassionate use. A lady in my support group had multiple lines of therapy and bad a bad heart. She got to NED on enhertu. They monitor her heart closely as it is a strong chemo.
BGRS, I agree with the others about talking to someone else at MDAnderson. Sounds like you talked to a newbie.
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Simone and Hope - thanks for the thoughts and encouragement on 2nd opinioin. I was surprised with the initial call/response, because I also thought getting a second opinion was an option, even if there is complete agreement with treatment
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Ok ladies here I am... I believe I will be starting this line of therapy next week..... I was supposed to then last minute we went with Verzenio...that didn't last more than 2 weeks SEVERE stomach acid pain from it....
I will admit I am scared of this drug and lung infections
I will be putting the pill in a capsule to try and help to avoid mouth sores any other tips for me that you have I welcome...Anyone that can hold me in prayer for minimal side effects, no lung issues and for it to work more than 4 months would be such a blessing to me...this will be my 6th line in almost 2 years...
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Looks like this thread is very slow....
. Anyway just found out my MO called in the lowest dose 2.5 mg.0 -
Nicole, are you gonna be at 2.5 mg? Or your MO called in 2.5 mg so it’s easier to adjust doses for you? ie, start with 3 tabs, if you tolerate then add 1 more ?
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Fig ...good point I didn't think of that...but I think we are gonna start at 2.5...and titrate up (I believe) I don't see her until the 8th I would like to start at 5mg...personally I know originally she wanted me to do 7.5 mg and we couldn't get that dose so maybe you are right
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Taking Afinitor and Exemestane. Notice some joint issues and thinning hair. Recently had very yellow urine for a whiile as well as frequent BMs, but not diarrhea. I drink qite a bit of water, so did not think urine color was dehydration. Hopoe those drugs are knocking out the cancer and not just my hair.
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Nicole- the mouth sores are not due to the pill touching your mouth- it is a pathway issue- you need a steroid mouthwash four times a day for 8 weeks - see article by hope Rugo at UCSF.
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I have the rinse and plan to use it...dexamethasone.....right?
I agree its not from "touching" the mouth but believe it or not many, many on FB groups disagree..either way I already bought the veggie caps for $5 so I am going to use them..maybe it will help with my stomach anyway.
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Not that anyone will see this...this thread is not a fast mover ...but I will post it anyway
Cross Posting...
Saw oncologist today... We will start with Afinitor and Exe. I have a PET scheduled now for the 19th April. We both know there is progression in spine:
1. Due to my consistant and new pain
2. My ALK PHOS was through the roof... 358
. I am so SO SO CONCERNED ABOUT THIS She said usually when ALK is elevated it is either from medications or progression. usually bone or in my case bone.....
My bilirubin which most of you know is usually my issue was 0.7 !!!!!! Doesn't get any better than that...that tell us liver is looking good. AST 45 ALT 51.
We will start the Afinitor at the LOWEST dose 2.5mg (which probably not even touch my cancer) for a week or 2..then if I am good titrate up to 2.5mg twice a day so 5mg.... then if that is good after 2 weeks go to 7.5mg a day and stop there.
We talked about going back to Eribulin right now...bc my bone mets are getting out of control...but ultimately decided to go with the Afinitor but scan at 2 months... I did ask if she thought the Eribulin would work better...she said probably yes...but we can give this a try and if it doesn't work we will go right back to Eribulin and or another chemo.
I will take the first pill at dinner tonight. Praying I do ok...and it subdues the cancer.
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Good Luck Nicole- I know it is really scary to start a new medication. It worked for my bone Mets for 10 months and I am really hoping you get a good break with it.
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NKB thank you so much. I just hope my stomach can handle it...
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Can anyone tell me if Afinitor with Exe is better vs Afinitor with Faslodex? I am thinking of asking my MO about going with the faslodex since its just a shot..(I had it back 2 years ago when I did Ibrance/Letrozole/Faslodex all together) I am thinking that my stomach might do better not having to take the Exe since its a pill?
Anyone have any info?
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My oncologist put me on 10 mg Afinitor and 25mg Exemestane, after Ibrance/Arimidex seem to fail, no mention of titrating either one. She also referred me to a Radiation Oncologist. Tumor is in the R-axilla. ( I already had radiation on the left in 2009). RO thought radiation would shrink tumor. I have lymphedema in the R-arm, and am very concerned that radiation will make it worse, possibly damage lung/ribs, and might not do much for the tumor. RO also want me to stop Afinitor prior/during and a little post, to radiation because the literature is unclear on possible interaction of Afinitor and radiation.
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I’m about half way through my second month of 10 mg Afinitor plus 25 mg exemestane. Really hard to find information on this protocol.
At the first of the year I tried Doxil. Complete failure.
So far Afinitor isn’t so bad: heartburn, fatigue, insomnia, sensitive skin, headaches, tender mouth. Sounds terrible but compared to some of the other meds it is not. I use the steroid mouth wash when my mouth flares up and prescription Prilosec dailyfor the heartburn.
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I was on Afinitor 10 mg with 25 mg Exemastane for two weeks, and I’ve got extreme fatigue, nausea, headache, dizziness, bad rash, high blood glucose, low platelets, vivid dreams/nightmares. I’m off Afinitor now for my platelets to go back up. Ironically, the only SE I didn’t get is mouth sore and I didn’t use dexamethasone rinse!
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