Topic: Afinitor/Aromasin 2013

Nov 14, 2019 06:08PM sbaaronson wrote:

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

Nov 14, 2019 08:42PM Nkb wrote:

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.

Nov 15, 2019 09:52AM 50sgirl wrote:

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

Nov 15, 2019 12:07PM Moomala wrote:

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

Nov 15, 2019 05:21PM Nkb wrote:

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.

Nov 16, 2019 04:07PM cling wrote:

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.

Nov 16, 2019 08:10PM Law828 wrote:

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.

Nov 17, 2019 01:05PM Law828 wrote:

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.

Nov 20, 2019 07:12PM Moomala wrote:

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.

Nov 20, 2019 07:37PM Moomala wrote:

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!

Nov 20, 2019 10:13PM sbaaronson wrote:

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

Nov 20, 2019 10:31PM Leee wrote:

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.

Nov 24, 2019 04:18PM sbaaronson wrote:

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

Nov 25, 2019 02:04AM Leee wrote:

My dentist mentioned clenching as well and suggested a night guard.

Nov 26, 2019 04:54PM Moomala wrote:

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!