Afinitor/Aromasin
Comments
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NKB,
Even with the knowledge that TM's would likely have risen, it is so hard to see the numbers move up! It's the psychology of it all...
So jealous that you're getting some rain, dry and terrible air quality here in the LA area... I hope you had a lovely walk in the rain!
Stacey
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Thanks for the coupon link Stacey. I will message my MO tomorrow morning. It's just stupid not to follow the trial protocol. Why vary from it???
We had snow all week over here in New York! It's beautiful and puts me in the holiday mood.
Bummer about TMs Nkb. Best to just put those numbers away and forget about them. You can think about them again when you're back on Afinitor for a few weeks! it's interesting some docs don't put a ton of stock into them. My friend (a PCP) went to Dana Farber for 2nd opinion when she progressed on I/L and her docs there don't even use them becuase they're so unreliable. I think I'll be having my one month on A/A TMs next Thursday.
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Sbaaronson- it was just a tiny sprinkle- but did wash the air to 28 on the air quality. two of my kids live in LA and the air is really affecting them- in the 150's!
yes, it's the psychology for sure- I feel like I have so much "psychological capital" and don't want to waste it.
Moomala- although my TMs do bounce around, they have been very accurate if they head uphill steadily. Mine are very high, so easy to see changes. I don't get scans every 3 months, I get a few with a new treatment and then do them based on the TMs and other blood work, it has been really nice to go longer between scans. I know that some people have extensive mets and normal TMs, so not a useful test for them. My one month TMs went way down, so I hope the same for you.
I love to visit snow- not so much to live in it. My 90 year old friend is snowed -in in Indiana, I worry about her, although her kids are nearby. I hope you are staying warm.
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Thank you so much for all the information! I have learned more on here than from my MO.
They have finally cleared up and I totally agree that they should have prepared me for the horrendous sores!
They said they will send in the RX if I have another sore. But to use it sparingly since it’s a steroid. With all this medicine that’s the least of my concern. Ha!
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Well, my medication was delayed. FedEx tracking showed that it shipped on time from Florida, but they never posted that it arrived ANYWHERE!!! Perhaps it was floating in outer space. They finally told me that delivery would be delayed by one day. I received it yesterday and took my first pills this morning. So far so god. Hahaha. How often do you have blood tests and see your MO? I forgot to ask my MO during my last visit. I do have an appointment in a couple of weeks, but I am curious as to what to expect after that. At any rate, it is nice that I don’t have to have weekly blood tests and infusionsas I did on Taxol. I have to catch up on this thread so I can become an active participant. Thank you for your help.
Hugs and prayers from, Lynne
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Hi All,
I am wondering who is taking Xgeva and what if any side effects you have encountered. Also, do you have a good understanding in terms of what this drug is supposed to do for us?
My bone scan results are inconclusive and now my MO is saying time to take the Xgeva, I have been putting it off. It's the psychology of being on yet another drug. Just 1.5 years into this and I am really feeling worn out.
Hope everyone has a nice weekend!
Stacey
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Hi Lynne!
This is a little like Ibrance in that you should have labs every two weeks the first two months and then once a month after that. They're probably going to ask you to do fasting cholesterol to establish a baseline. I see my MO every few months but I see the NP for a check-up once per month.i'm hoping your side effects are super mild or non-existent! I just began week four today. I had some mild stuff at first - appetite and taste changes, a little insomnia, a little fatigue, a few bumps on my scalp that itched a little. I'm getting a touch of fatigue the last week, but it seems to hit about 3-4 PM and I'm still working through it, meaning finishing my work day and doing my usual evening activities.
Glad your medications were delivered so you could start today!
Janet
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Stacey
I am taking Zometa and have been since the beginning of treatment. Do the Xgeva. I have compression fractures in my spine and a fracture in my hip. I can no longer run or do any sort of impact exercise.
MO told me that Zometa and Xgeva help shore up bones that have been impacted by osteoporosis and mets.
I wonder what inconclusive means on the bone scan. I'm just happy you aren't saying you have to make a treatment change. I think adding Xgeva will be pretty easy but I get what you mean about it feeling like too much sometimes. My Zometa infusion is just a fifteen minute trip to the infusion room every three months.
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Stacy- I am on Zometa also. When I was stage IIIC a study came out saying it decreased risk for bone Mets by a few percent I did it every 6 months for 2-3 years then stopped. When I got bone Mets I have been on it every 3 months. It is supposed to make it hard for bone Mets to flourish and has some immunogenicity as well as repair. You Do have to inform your dentist- get dental work done first.
Lynn- I get labs every month. Every other month it is fasting with lipids and fasting blood sugar added- otherwise TMs, urine, liver function, kidney function, CBC. After the first month my ANC was a little low and I had to hold the afinitor for a week- but, since then it has been fine (tho not rip roaring). My blood sugar is still normal , cholesterol has gone up a lot. At baseline I also has an sed rate, but only once.
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Hi Moomala and NKB-
I schedule the first injection for the 29th, happy day after Thanksgiving!
Most of the stuff in my bones is now sclerotic with the exception of my right ischium. But, now they are seeing what they think is degenerative disease, not cancer on the left side of my pelvis. I do have some pain, like a 3 out of 10 in my pelvis after I run fast and hard, but it stops if I reduce my speed. No pain during exercise.
I haven’t seen the snow in some time, will have to get out of LA and get some real winter this year.
Because life does indeed go on, I looked up and noticed the skylights in both the bathroom and kitchen were cracking. Roofer had to come out today and replace them both as well as part of the roof, damages from where they had leaked last winter. Truly un-sexy monetary outlay!
Also, my daughter walked into the house today crying, she’s 24, there were massive lay offs at her company today. She wasn’t laid off but she was sad for all the people who were. I am so glad I was here to put my arms around her and listen. #momlife
Have a nice weekend all!
Stacey
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Stacey, I have had monthly Xgeva shots for over 5 years. It is an easy shot on the arm or belly if you choose. No SE for me over 5 years. It is to strengthen the bones. Some people has changed to quarterly or every 6 months after awhile. But my Onc still keeps monthly for me. Be sure to get all necessary dental check done before you start Xgeva because it affects oral bone structure. If during the shots you need to pull a tooth or do any procedure that will touch the bone, you will have to stop the Xgeva for up to 3 months; otherwise the procedure may cause ONJ. Don’t be afraid of Xgeva shot, it is easier than Zometa infusion.
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Lynne, I have labs and office visit with NP every 4 weeks to check on the body reaction to the drugs, then every 3 months to have scan then visit with Onc. My blood sugar is already gone thru the roof, don’t know about the cholesterol level ( I usually have very good numbers). I am on AA for two months now, except once with two minor sores, almost have no other SEs. Most people here now have few SEs, so don’t let earlier posts scare you (I resisted for 3 years because a lot people said AA has the worst SEs).
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1st week of being on Afinitor my sugar levels climbed pretty fast. 3 months later struggling with sugar levels I am off afinitor because it was not working, and my sugar levels are still high but not as high as they were. I think I was pre diabetic with my sugar always at about 97-108 before Afinitor. I have been off Afinitor for 2 weeks and sugar is better at 200's but still high. How long do you think it will be before my sugar goes back to normal? I am off metformin too. So frustrating to me. Thank you all.
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Law828, Who prescribed your Metformin? Go back to the prescribing doctor, who may need to continue monitoring your blood level for the next few months after you are off Afinitor. Once blood sugar is elevated, it wil need meds to bring it down. I am diabetic but prior to started AA, it was well controlled with A1c at 6.2, I am yet to have another A1c test, I can be sure it will be in upper 7s or even in the 8s. But if AA works, I will live with diabetes, at least it is controllable.
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Thank You Cling. My Oncologist is the one that prescribed it, but I don't think she would want to continue with checking it. I think I might need to find a doctor to help me with this. I do not want to be on meds. I don't know what A1 I am at nor have I ever had that test. Thank you cling! I am happy that Afinitor is working for you and may it continue to work for a lot longer too.
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Hi Cling,
Thank you so much for taking the time to share your experience, I am truly appreciative.
Hope you enjoyed the weekend!
Stacey
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Hello my Afinitor friends! 50sGirl how is your first week going???
Starting week five tomorrow. Things are going well. Really mild side effects and mostly resolved. I lost weight in the beginning but gained it all back (and more) I feel I'm getting a sore on my tongue today but I'm still on swish four times a day so hopefully it'll be mild. First TMs o this combo tomorrow and I'm nervous about it. I don't have a good feel for how reliable my TMs are. At this point I'm just hoping for stable scans and that has not happened. My next scans are not until the end of January so I've got awhile to wait.
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Moom- here's hoping for great TMs. Mine went down a lot after the first month. I did occasionally feel a little sore tongue the first few months and added in a few baking soda swishes as well.
My tongue got really bad after the antibiotics- mostly sore feeling, no open sores. I restarted the Afinitor after being off for 2 weeks and thought I might have trouble, used the swish a few times per day for a few days and all was fine so I stopped.
I see that it rained a little in LA so the air quality is much better there now! I am heading down there in a few days for TG- I hope it doesn't rain during our meal since my DH has a tiny house and a big deck which would be perfect for the meal.
Yes, Lynn- how is it going?
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I was at the dentist today Nkb. I was thinking of you. I have a crown with an old root canal underneath that's bothering me. I did bite on a seed the wrong way a week or so ago and the dentist says the x-ray looks ok and thinks I may have bruised something in there. So just Advil for a few days and will check it again next week. The advil is working great and making my back feel better too. Whee!!!! The dentist was upset to learn I was on Afinitor and Zometa. I hadn't seen him since before my diagnosis in April. He talked to me about ONJ and dry mouth and mouth sores and the dexamethasone. He was cool about it but it was a bit much. He was in lecture mode and I was thinking 'dude I'm ON all these drugs so I KNOW all this'.
I'm looking forward to not having to swish. I'm thinking of moving down to three times a day for a few weeks and then two times a day for the last two weeks. The pharmacy did not send a second month of rinse and I haven't heard from MO yet about it. But I have plenty to last the next four weeks if I reduce the number of swishes over the next few weeks.
Thanksgiving on a deck? That sounds funny to me. We're having unseasonably warm weather for late November (40s and 50s for the next week) but typically we're dealing with snow and cold. Our decks are buttoned up for the winter!
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Moom- the fact that the Advil is helping with you tooth is good news I think. it helped me for a few days at first, but, then stopped helping and the X-ray of the tooth was not normal.
LA is in the 70s usually at this time of year- haha- I realize that sounds odd.
I have been doing Advil every evening since back on an AI, helps with the aches and pains and sleep, and may be good for cancer- who knows. I do know that Aleve does not go well with Afinitor- which I used to use for occasional migraines. won't use that if I get one.
Let us know your TMs.
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Moomala,
Hoping for downward motion on the TM's! I have been on the A/A protocol for about 6 months and still get the occasional mouth sore from time to time. It makes sense to keep some of the mouthwash in the house.
Enjoy your Thanksgiving Day!
-stacey
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NKB,
The rain in LA this morning was so nice. I am looking forward to getting up tomorrow to the first fresh air we have had for awhile! It was actually chilly, I heard some places had hail.
Looks like we may have a rainy Thanksgiving this year with temps in the high 50's. That's so unusual, normally we have a heatwave!
Good tip on the Advil for the aches and pains, I have been using a CBD product but may try combining them.
Have a lovely Thanksgiving!
Stacey
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I also have a tooth that had a root canal and crown that has been very sore. Dentist/endo said it looks fine and must be from clenching teeth night. I’m not sure that’s the case.
My MO will order the rinse but only if I get another sore. Since it’s a steroid to use it only if needed.
Starting week 5 and otherwise feel pretty good.
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Ok got my TM's back after one month on A/A. CEA was down. CA27.29 was up. Not surprising. My CA27.29 bounces around like that - still there's that tiny bit of hope that the numbers will fall a bit after a month. Ugh.
Still fighting this toothache. It's so much worse today, but two Advil helped a lot this morning. I've also had a raspy throat, and a bit of chest congestion this week. This is making me feel a little discouraged and wondering if I'm developing the dreaded pneumonitis already. Or - my lung mets are acting up? I don't know - either way between that and a toothache that is going to require another visit to the dentist this week and CA27.29 at 244 up from 209 two months ago, I'm not having my most wonderful week! Focusing on my CEA dropping 89 to 78 in the same time frame. Gotta keep my eyes on the good things - one of which is that I feel pretty alright on A/A!
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Hi Moomala,
So sorry to hear you are still dealing with the toothache! It sounds like you may have picked up a cold or something, I don't think it;s pneumonitis! I think 30 days in is too soon to expect anything on this drug combo, I hear it takes awhile, 3 months or more. It's great that you continue to feel good on the protocol, every day we feel good is a good day!
Try some of the folk remedies for that congestion and stay well hydrated!
Best,
Stacey
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Moomala- I don’t know which of your TMs are more predictable, but, have CEA go down is great news! I’m going with a positive take on the results. Keep vigilant with your tooth!
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My dentist mentioned clenching as well and suggested a night guard.
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Off to the endodontist today Nkb. This tooth pain has started radiating around my mouth and although my x-rays looked good a week ago and the pain is intermittent, it seems to be getting worse and not better. I suppose if I need a new root canal I'll have to have a new crown too eh? This has been a horrible financial year for DH and I between cancer and now this. Ugh!!!
I don't know how they'll handle me what with being on Afinitor etc, however I also put a call into MO this morning about this daily nagging hoarseness necessitating coughing to clear and they were not too happy I didn't call them two weeks ago when it started. MO will likely be taking me off Afinitor for a bit, but we shall see. I suspect that today, I'll be going off Afinitor and on antibiotics at the very least. Advil helps a bit with the pain but not enough anymore. And who wants to take that for weeks on end anyway.
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Ok back from the endo! One root canal later and I'm home eating mashed potatoes and amoxicillin and advil. The MO said to keep taking Afinitor and the dexamethasone rinse. I was certain I'd have to stop taking it during the recovery of the root canal but nope.
Nkb, the endo said that the x-ray I had done last week was just a little too early to tell but that today's xray was clear - I was developing an abcess in an old root canal. Now my fingers are crossed that the crown stays intact. And that my mouth will feel calmed down enough for turkey dinner!
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Moom- my pain was pretty bad by the time I saw the endo- first antibiotics for a week and stop afinitor for a week, then hole put in the crown and dig out old root canal and placed antibacterial sticks for one a week and temporary put in the hole - one week later dig out the antibacterial sticks and do the root canal. I feel good now- tho my jaw was really sore from the 6 shots out into it for the two procedures. So, I didn’t need a new crown luckily
Back on the Afinitor after 2 weeks- the first few days were a bit rough for an hour or two.
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