Afinitor/Aromasin
Comments
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Lynn- Thank you. my MO called to let me know results- but, appt is next week. she mentioned trying tamoxifen- I had my doubts- but, on the other hand it won't hurt me (I hope) and might help. in the meantime there is a new bone biopsy test she wants to do to check for mutations and recheck hormone receptors. She thinks that I am still ER+. This bone bx is done in the bone with the most uptake on the PET and done with twilight sedation (yikes). fun times.
Hope you are in Hawaii soon!
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Ohhhh crap Nkb I am really really sorry. You really have had a good run with A/A - especially with the side effects! It's just yucky when it comes to an end and there is a little uncertainty in there now about what to do now. Good on the new bone biopsy. They'll tell you whether you can start Piqray or not. I know how disappointing this is when you get used to something, feel good on a treatment, QOL is pretty good and it works for a time. Then - well maybe not. We all get our turn at this apparently. I hope you can have a nice weekend and when you see your MO next week hopefully a doable treatment to move on to.
Big hug!
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Nkb, sorry to hear that you have progression, but if it is still in bones it’s still a good news. How you feel physically? Any pain? A big hug to you!
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Cling- thank you. I actually feel great! I am trying to stay in the moment of feeling good. somehow because this is my second progression I guess, I am much more calm. yes, I am very lucky it is still just in the bones. I have no pain. I am not looking forward to the bone biopsy - but, I suppose it may yield some useful info.
Hugs to you also-
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Hi NKB,
I am so sorry to hear that it's official and you are working on what's next. These bone mets seem to be tough to beat back... I think the biopsy, while not fun, will help provide knowledge, and knowledge is indeed power. I have had the same ease of use experience as you have with the A/A combo, and I too realize that I am getting close to the median usefulness of the drug. Please do keep us updated, it goes without saying that we are all pulling for each other in this slog!
I hope you are having a lovely weekend and getting a bit of this glorious SoCal weather up north. I had forgotten what it is like to go out without a jacket!
Warmly,
Stacey
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Nkb, sorry to hear about the progression. As others have already stated, bone mets is harder to treat. I was on Ibrance/Faslodex and then moved to Aromasin/Afinitor and later when these stopped working, I had a genetic mutation test done with the samples from bone biopsy. I have PIK3 mutation. I had the option of taking Piqray or chemo. I chose chemo, since I had read about nasty side effects with Piqray.
I was on Taxol for 6 months and then CMF. As of now, the bone mets and the liver mets are stable (no progression). At present I am getting a chemo break and started on Femara.
So there are a lot of options available. Hopefully something will work for you. It's good that you are getting the biopsy and genetic mutation test done.
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Hi All,
Updating post bloodwork. A/A seems to be doing it's job, I have been on it now since May 2019. My CEA rose about .7 but the 15.3 and 27.29 are both down. My actual bloodwork is really good, just my AST a smidge outside normal, but this has been the case for some time now.
I was surprised, with the ongoing worst rash ever and swelling in my right breast. Anyway, I will take it. I can do this drug, and hope it continues to help. I will also note that I just had my 3rd Xgeva shot, I wonder if that's helped?!
Best to all!
Stacey
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Stacey, I am glad that your bloodwork results are good. WOOHOO!
I arrived in Hawaii two days ago and am enjoying the warm weather. Maybe I will stay forever . Lol.
This is the view from our room.
Hugs and prayers from, Lynne
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Lynne,
That looks amazing! I am so jealous, please keep sending pic’s so I can close my eyes and live vicariously through you! Enjoy those white sand beaches, clear waters, and tropical fruits!
VACAY!!
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Great news Stacey! I hope it contiues to work for a long time! There's a woman in the Afinitor FB group who has been on it since 2014!
Lynne omg Hawaii sounds SO good about now as we're preparing for a rather large snow storm here in western ny. It's SUCH a long flight but so worth it when you get there! Can't wait to see more pictures!
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I am really not a good “patient” patient! I am in the hospital waiting to get blood infusion. But i have been here for 3 hours and have NOT seen the admitting doctor or his promised NP! I am furious, and ready to discharge myself! It all started I got a blood test in preparation for a GI doctors appointment next Monday. His office called that I am anemic, blood sugar is high , and hemoglobin is low. I told the nurse, nothing is new, I see my Onc every month, PCP every 3 months for blood test. Then before lunch Onc nurse called that they got GI report, I am totally not concerned because I will discuss with Onc next week about remedy. Yes I occasionally will have shortness of breath, that’s after my 30 minutes twice daily walk! An hour later the Onc-PA called me at a restaurant and told me Onc is concerned about my situation that I may get a heart attack, even I am still feeling OK at the moment ; and she directed me to go to hospital admitting and asked for one specific hospitalist that Onc has talked to. Well that’s more than 3 hours ago!! I finally got to see a NP and now will have to stay in the hospital for the night. RRRRRrrrrrrrrr 🤢🤢
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cling! Such a bummer. What was your hemoglobin? Why is it low? I did know someone who did have a heart attack with low hemoglobin ( and no cancer) and all she felt was a little anxious. I am glad they are filling you up with nice red blood- sorry about the confusion at the hospital- it is hard to wait.
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Nkb, over 6 hours since arrived in hospital, I am still yet to see the red gold! My hemoglobin has been declining for several months for unknow reason. 1/13/20 was 7.9 and a stool sample test ruled out any internal bleeding , blood test ruled out iron deficiency. As of Tuesday, it went down to 7.0. So my Onc decided to send me to the hospital for transfusion. Just wish the blood will show up soon
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cling- that sounds awful! No infusion clinic to do it? Course you do need a type and cross before you get the blood- I don’t know how long that takes to get the results. I wonder if they don’t have the blood on hand that you need or just stupid inefficiency. You will feel much better once you get that red gold- hope you are reading this with a hemoglobin of at least 9
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Cling, having been sent to the ER twice in the last few months I can completely sympathize. MO was saying "get to the ER right away" and then I got there and waited and waited and waited for the treatment. It took forever and then resulted in an overnight stay, getting admitted blah blah blah. I'm sure by now you've gotten the blood and are already feeling better. What an ordeal.
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Cling, I hope you have recovered from the drama surrounding your blood transfusion. I don't understand how doctors and hospitals can make it so complicated. Many people with cancer are anemic. My hemoglobin hasn't been over 9 for two years. While I was on Taxol, I had transfusions every time my hemoglobin went below 8. I had them every 4 to 6 weeks. I know my count is down now because I huff and puff every time I walk up an incline or stairs. At its worst, I had to rest after something as simple as taking a shower. Things could be worse, and I have adapted.
I am still in Hawaii and still having a great time. It rained this morning. I will try to remember to post a picture of one of several rainbows that appeared afterwards. We took a tour of the island yesterday and saw beautiful beach after beautiful beach. How can I leave this and go back to winter and cold and snow? I guess my puppy will be anxious y to o see us.
Hugs and prayers from, Lynne
Best snorkeling on the island in this bay0 -
Hi everyone,
I am new to this board and was wondering if anyone was taking Afinitor and Faslodex together?
Dee
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I finally left the hospital on Saturday at 11am. More than 4 hours after admitting, the NP finally showed up. When I asked why it took so long, she said “I didn’t know you were here.” 🤢 Once she showed up, order could be processed, type and cross match could finally start, but it still took another 6 hours for the blood to “tube” here. Yes, the blood showed up thru a tube like a bank teller tube! I had elevated temp throughout the transfusion, and temp in the 99s delayed my discharge for 2.5 hours Saturday morning. After transfusion, I am more tired than before, and have temp in the 99s for two days. Since I have Mets to bone marrow, I guess I will have needs for transfusion again.I need to check out better places than hospital that understand how to treat cancer patients for blood transfusion needs.
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Hi AlabamaDee - I hope someone will chime in to answer your question. I'm on exemestane so not much help sorry! Welcome to the Afinitor board. It can be a little quiet in here but the few of us posting will show up anytime you need us!
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Cling, I am sure that being home is sooo nice though. I hope you are feeling better today. Our big hospital here has several satellite locations just for cancer treatments and seeing your oncologist. It's nice but they are limited. I was sure that when my potassium fell too low that I was going to be getting IV potassium at the office I normally get my zometa infusions. Nope. Sent right to the ER where it took them a really very long time to get the potassium going. In my case it really isn't their fault - I see that they have a lot of patients coming through ER now and they also have a lot to do to get you checked in. Still being forgotten about in the hospital sounds a little scary. I was taken from ER to the wrong room twice (the first room they tried to put me into had a man in the other bed - uh no) and I kept insisting that I was in the wrong room and on the wrong floor. They kept insisting back that I was i the right place. Finally someone came in and said 'this is the wrong patient in this room' and I was taken to oncology floor.
On my next follow-up with MO, she said 'gosh I thought they would give you a bag of potassium and send you home' Well they don't do that when youre stage four and I was a bit surprised that she didn't know this.0 -
Hi Dee-
I am on Faslodex and Affinitor. 16 cycles thus far and scans have been stable. Wishing you the best!
Angie
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Dee- I also did exemestane with the afinitor - but, did do faslodex with the Ibrance. Be sure to look at the post Re ways to make the injections better.
50’s Girl- that looks fabulous. Hawaii is so healing. You can come to California with your puppy when you get back- we are having really nice easy weather.
I have been off AA for 10 days- definitely went through a withdrawal of some sort with terrible bony and muscle pain for 4-5 days.
I had my bone biopsy today - super high tech affair- not like the bone marrow biopsy. Done under fluoroscopy and sedation. He chose the front of the hip bone- although he said he had lots of choices for location of active bone Mets.
. Right before surgery he said the usual what is your name, birth date and what procedure are you having. I told him you are doing a bone biopsy to get information to help cure my cancer. He paused and then said, that’s right. Hugs
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Lynne,
What glorious pics! Living vicariously through you! Had any great meals?
Do tell!
Stacey
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Stacey, Here is the deal with food. My appetite is terrible, and I feel full after eating small amounts of food. This bothers my dh and he is always trying to push food on me even though he denies it. That is the only thing that reminds me that I have cancel while I am here. Ilost 10 last month. I do feel that I have gained some weight here, but I haven been on a scale. My belly seems bigger sigh. So I have wasted some very good meals. I did split a delicious rib eye steak with my dh the other night. I was surprised how good it tasted since my taste buds are a bit off. Cereal is my friend. I have been eating several small meals a day, but I have to admit some of it is less than nutritious. Haha. We leave to go home on Friday. So sad. I am sitting on a lounge chair overlooking the beach as I type this. This is the life.
Hugs and prayers from, Lynne
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Lynne, I hope you tried some seafood in Hawaii, especially poke. My son has lived in Oahu for 12 years , every time we visit , he will show us some hole in the wall places that locals frequent. I love seafood, once he took us to a small Japanese restaurant in an industrial area, inside a whole sale seafood.distributor. We had the best, freshest seafood. My appetite is very small, and Hawaiian plate is huge, so I usually just get a bite from what hubby and son ordered.
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Hi Lynne,
I don't know where in the country you normally are, but I have found the Papa & Barkley Releaf Caps 30:1 ratio CBD-THC really help my appetite without getting me stoned. I am Los Angeles so I pick them up at the dispensary. I am with you on the cereal eating, it's definitely a regular dinner choice for me. Regarding the weight loss, I too lost 10 pounds, I haven't been able to put them back on but my weight has stabilized. I am hoping you find the same happens for you. If you get full fast, it has to be high calorie choices in small quantities!
I am so pleased that you have been thoroughly enjoying your vacay! Tropical weather is so soothing! Stay in hula heaven for a few more days...
Best
Stacey
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Well, I arrived home yesterday. It was 87 degrees when I left Hawaii. I looked at my phone, and noticed it was -4 in my hometown. Let me tell you, I didn’t want to get on the plane.
Stacey, thank you for your suggestion. I will look into that.
I will be seeing my MO on Tuesday. I am interested in hearing his opinion of my scans. I think he will keep me on Afinitor and Femara. I hope so because I feel good and do not want to change treatments so soon. I feel like I am running out of options, and frankly I enjoy my life.
I will check in after my MO appointment. I hope everyone is having a good long weekend.
Hugs and prayers from, Lynne
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Ooooh my tumor markers took a deep dive this month. I looked back at my past results in MyChart and my TM's have dropped 35 percent since Oct when I started A/A. In fact, my CA27.29 is at 159, the lowest it has been since diagnosis last March. That, and the stable scan I had a few weeks ago are feeling like some SE's are worth it. I'm still having a LOT of back pain but this is from compression fractures and resulting nerve impingement. And I do have fatigue and achy bones starting about 3-4 PM ever day. Started month 5 of A/A this morning. After everything I've been through the last few months with illness and hospitalizations and stuff this feels really great!
If I didn't have back pain life would be hunky dory, but this gives me an opportunity to experiment a little with pain management the next few months. I had good day yesterday and cleaned my kitchen plus cleaned out the fridge and this morning my back is talking to me. Ugh.
Nkb are you still here? Did you get your bone biopsy back yet???
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50’s girl- that is quite a temperature difference! I hope you are staying warm. I always loved the Hawaiian breeze- the steady 83’ with breeze is my comfort zone.
Moomala- fantastic news! Now if you can just get rid of that back pain and enjoy your good news !
I got my bone biopsy- not fun that day with fasting, drugs etc but the recovery is effortless. I did have total body pain for several days off the AA- but that is gone. The results won’t be ready for 4 weeks.
I took about 10 days off all meds and then started the tamoxifen which hasn’t bothered me. I hope it works for a short while at least- so I can avoid chemo or piqray - always hoping something wonderful is waiting for us when we need it.
Hope everyone else is enjoying their days.
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I had my MO visit today. All-in-all it was a good visit. My blood pressure that had been rising for a few months is down. My liver numbers are down to normal. I told my dh we have to go back to Hawaii. My MO discussed my scan results in detail with us. He is thrilled with the shrinkage of all my liver mets, but concerned about my spleen. My lack of appetite could be from medication or could be from the spleen. The plan is to stop medication for two weeks to see if that helps. If it does he will likely reduce the dose of Afinitor and have me stay on it. That, of course also depends on further tests on spleen. I will have an MRI to get a clearer picture of what is going on there. My MO called the radiologist to discuss, and that is plan they agreed to. If there really is a problem in the spleen, I will have to change treatment. I hope that is not the case. I will return to MO in two weeks.
Nkb, I am glad that your bone biopsy went well. Four weeks is a long time to wait for results. Piqray scares me. I have read so much about the big D.
Moomala, it sounds like you are doing better. I wish you could get rid of that back pain.
Hugs and prayers from, Lynne
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