Afinitor/Aromasin
Comments
-
My new MO at UTSW Dallas, NCI Designated Cancer Center, is a MBC specialist. I felt a weight lifting off my shoulders as I walked out of her office. I'm finally where I am supposed to be, it makes perfect sense.
As I told her my story, all 27 years of my BC and MBC personal history, she seemed especially interested in my fiasco with AA. She didn't seem surprised at all, in fact she kept nodding as if she's seen my scenario many times before. She, I think, would never have put me on it to begin with. She could easily tell I'm not a wimp who just didn't try hard enough. No one who knows me would ever imply that about me.
I'm in a much better place emotionally and physically to begin whatever is next. She's thinking X or clinical trial. I won't know until after my PET etc.
0 -
Grannax, I'm really glad you found an MO you feel safe with! That is so very important. And none of us here are anything close to a wimp. We're dealing with something that is insanely difficult. We're all fighters here. I also believe that we dont fail the meds. They fail us. There are many people on here that have AA difficult, I always think I got lucky on it and suggested the things that worked for me, so they know they've given it their best also. Also, 27 years! Thats amazing! I hope you have a great run on X or whatever's next and you have many many more years!
0 -
ann273 It breaks my heart to hear that you are only 33. I hope your youth and strength will be excellent allies in your fight against MBC. Also hoping that as treatments evolve this becomes more a chronic, treatable disease than the death sentence it was in the past. Wishing you lots of good time on Ibrance, I enjoyed my 3+ years floating on DeNial.
Angie (MM) - How are you doing since reducing dosage? Hope your scans this week show this combo is working for you!
nkb - Wow, your description of se's on previous page was spot on! I should print it out to take to my mo, ha ha! Hope all is going well for you.
I had a PET scan yesterday and got the report today. Mixed results. Liver tumor is smaller and less active as are some spots in pelvis, but now have other new activity in pelvis that was not on November scan. I had hoped to ask for a dose reduction of Afinitor, but after seeing these results decided to continue toughing it out on 10mg for now. Also saw my pcp this month and blood pressure and cholesterol are both high now, so 2 new prescriptions are coming my way. Yuck! Before MBC I took nothing at all. But I am still here nearly 5 years after de novo dx, so I shouldn't complain.
0 -
jobur- hopefully the continued use of the 10mg will kick in. There is evidence that cholesterol meds are anti- cancer. The UCSF doctor told me she is “ always happy to have an excuse to put someone on a cholesterol medicine”
I haven’t had any lab yet- on day 19, symptoms are better. Will see what havoc it does to my labs in about a week. Are you anemic? Are your platelets and ANC normal?
0 -
jobur, thanks so much, I hope you are right about Ibrance working longer and this eventually becoming a chronic illness! Some days I hold on to that to survive. I Was 27 at initial diagnosis and at the time I didnt believe I'd reach even 33, so small blessings I suppose. My MO wants to wait for another TM result before getting a scan. Really hoping to get some more time on Ibrance. Hope the 10mg dose isnt too tough on you!
0 -
Hi Jobur- I was so praying that your scan results would be great! Just keep on keeping on....My scan is on Friday and I see the MO on Monday. No real scanxiety for me. I am doing fairly well on the reduced dosage. Biggest complaint is fatigue. Dealing with other issues that are not really related to the A/A combo. I mentioned previously about having SOB and spending a couple of days in the hospital. Hospital did routine tests but found nothing and sent me home on oxygen. Before a week was up, I was back at the ER with severe SOB. They finally did a scan and said I had fluid around the lungs...pumped me full of lasix which relieved the SOB but unfortunately affected my kidney function (only have one kidney). I was diagnosed about 10 years ago with cardiomyopathy (from red devil chemo in 2001). My heart appears to be getting a bit weaker, hence the reason for fluid buildup. Always something..... It is doubtful that I will have contrast with my scan on Friday due to kidney function and this does make me a bit nervous since I believe the contrast shows a much clearer picture, but it is what it is.
Now back to you....your Onc is going to keep you on A/A even though you have progression?
Wishing you and all of us better results with each passing day!
Angie
0 -
Masonsmawmaw- how did your scan go? How are you feeling with your SOB?
Jobur-how are you doing?
I have completed 26 days of 10 mg- besides fatigue, I am doing pretty well. I went to the lab and my cholesterol was up- still close to normal, fasting blood sugar increased from 86 to 95- was eating the Queen's favorite chocolate biscuit cake- so will cut that out. My platelets and anemia were unchanged- but, neutropenia is grade 3. (ANC 720). so I am off meds for a week and if ANC improves will start back on the same dose. My MO thought that is was my bone marrow mets that made me have a hard time with my white cells- not the meds, we will watch.
My TMs almost doubled the 2 months I was off meds -even though my progression looked fairly mild. After a month of Afinitor they have come down quite a bit- no where near what they were when I stopped the Ibrance.
Hugs,
Nanci
0 -
Nkb...scan results were mostly good. A new area did light up in T8 of spine and a very small area in lung is still visible. We are going to scan again in 3 months to see if anything changes. SOB has pretty much cleared up...thank goodness. My biggest complaint is fatigue...like a balloon, I start deflating around 3 in the afternoon and I'm usually in bed by 8 at night, sleeping until 8 the next morning.
So which drug is causing your neutropenia?
Angie
0 -
masonsmawmaw- I think that my MO meant that the bone marrow being filled with cancer ( getting worse as I was off meds for 2 months) made my bone marrow have trouble making cells in the environment of the afinitor. As the bone marrow clears out ( if meds work) I should have less trouble with low ANC. Afinitor has a 3% incidence of grade 3 neutropenia. It does have a lot of grade 2 (defined as >1000 but<1500) but, that wouldn’t have made me have to stop the meds for a week. She still thinks my chance of infection is low, like when you have a low ANC with Ibrance.
Glad you are feeling better!
0 -
Nanci - Sorry to hear about your neutropenia, but glad you are adjusting well to this combo otherwise. Was your ANC low before starting A/A? Hope your body gets busy making some neuts during your week off. As your mo has explained it, is there a difference between bone marrow mets and bone mets? My mo says no, but from other posts on bco I had the impression there was a difference. May I ask why you were off tx for 2 months? Yay for TMs going down after only 26 days, this has got to be a good sign.
Angie - That SOB must be scary. Hope that getting rid of that fluid around the lungs will make it easier for your heart to keep up. Sounds like your scan was sort of similar to mine in that it showed somewhat mixed results. Maybe A/A is slow to work on bone mets?
My mo and I decided to stay with A/A for another 3 months in spite of progression to pelvis, then scan again. I always ask for a copy of my PET scans and seeing those brightly shining areas is kind of disturbing, but I can't imagine changing to a different tx again so soon. My CA-15 TM has always stayed in the normal range, but nearly doubled when Fas/Ibrance failed. Since starting A/A they have been coming down a couple points each month, so keeping my fingers crossed.
Has anyone else noticed weird changes in BMs? That and fatigue seem to be my lingering se's now. Body aches were bad for a while, but seem to have tapered off. Maybe because fatigue is making me too lazy to do much of anything, ha ha!
Hugs to all,
Jo
0 -
Jobur- my ANC was 1.6 before starting - about as high as mine gets. It is now .72. Needs to be .9 to go back on meds. The literature says that 3% of people get grade 3 neutropenia- that's why she thinks it is the bone marrow having trouble with the drug, not the drug alone.
My bone and bone marrow Mets were discovered due to my severe anemia and SOB walking up hills in Yosemite
I was off treatment due to trying to decide on next course and getting a second opinion at UCSF who rescheduled the appt twice. Then it took about 8-9 days for the drug to get to the pharmacy.
I am hoping that the TMs coming down is a good sign.
So your liver is better, but your bones are worse?
0 -
greetings. Your maturity (age) drew my post to you. I am 72 and feel fortunate facing c in my wiser years as opposed to busier times. The stamina and resilience of contributors is energizing. My way of dealing with tough stuff has mostly been to do it alone, though I have solid support here at home. Am starting A/A tomorrow. Feeling shakey. Found some solid support ideas here last evening. Feels good too. Ibrance and then Fuvestrant + were well tolerated but not long lived in their effectiveness.
Just happy to have connection with those in ‘similar shoes.’ Grateful for all responses too.
0 -
Oops! 72 was NOT your age. 😏👍🏾 Not that it matters. My eyes saw what I wanted to see
0 -
Welcome Charlotte! You live relatively near me and I have driven through Elk River many times. (I live near Eau Claire, WI) I wish you success with this tx. Were you really dx'd at stage IV in 1992? If so, you are amazing! (if not, I'm sure you are still amazing, ha ha!)
Nanci, How are you doing? Did your ANC come back up to where you are able to restart tx? Hope your body is adjusting and you are feeling okay. Also, I am very jealous of your proximity to Yosemite!
Now that the weather is growing warmer I have been getting out for a walk most days. It really seems to have helped fight the fatigue. I have a bad case of spring fever that is probably affecting my judgement, but the last few days I have felt nearly normal. At least as good as when I was on Ibrance & Fas. Hope this stuff is working as well!
Best wishes to everyone.
0 -
Charlotte- welcome. Not 72 yet- hope to be someday. 😉. I understand your fear of starting this drug. I had fear also- Esp when someone had a rough time with it right before I started it.
The first few weeks I was very tired, weird rashes, mild nausea and stiff joints ( maybe from the exemestane) now I feel totally fine on it. As jobur says- almost normal. I hope it works!!
Jobur- my ANC bounced back to 1.3 after a week off, also WBC was Normal for the first time in years ( I was elated- silly I know) my HGB is better than it was too. So- lots of yoga and walks, haven’t lost an ounce, eating the same pretty good diet plus dark chocolate- if blood sugar or cholesterol issues come up I will try to improve it- not much room to move.
I am so glad you are feeling good!
0 -
Charlotte- how did your first doses with AA go?
0 -
Good morning, ladies. I would love to join your topic as I have just started this combo. Lots of good info here. I was on Kisqali/Femera combo for 18 months and did pretty well on the full dosage, at least until the last few months. Markers started creeping up and adrenal tumor grew just a little. Bones stable. Hoping this one works for a while. Gotta say it was a little scary starting a new med, especially with all the SE's reported here, but so far so good. Only one week on, but feeling OK.
Wishing you all luck and hoping to hear some good results from all of you.
Kathy
0 -
Nkb, I hadn’t heard that anticholoesterol meds are anti-cancer. Very interesting. I take a statin for high cholesterol which runs in the fam.
0 -
Devine- I had heard rumblings over the last year or so about whether to take a statin if you have cancer and don’t have high cholesterol- haven’t read any studies. It may be like the metformin data- works for some to decrease recurrence. I have not discussed it with my MO yet- when I see her if my cholesterol keeps going up I will.
It was the breast cancer specialist at UCSF that mentioned it. I hope that it helps your cancer as well as your cholesterol! Double bonus. If I need a cholesterol med I will discuss it with a good friend of mine who is a cardiologist- see what he knows. In other words- I don’t think they feel strongly enough to recommend it if you also don’t also need it for your cholesterol.
0 -
Welcome Kathy! I love your username, gave me a chuckle. Yup, it's scary starting a new tx, and this one seems to have garnered a bad reputation. That is why it's so good to have each other to connect with. Hope week 2 goes as well as the week 1.
Angie (MM) - Haven't heard from you for a while, are you doing okay?
Dearest Mrs. M - Do you have any se's from the statin you take? I seem to have picked up a few new ones since starting generic Lipitor, very achy/painful legs when I lay down and my right (mouse) hand seems to fall asleep if I stay on the computer too long. How is Ibrance treating you so far? I hope you get many years out of this tx.
Nanci - Hope you are still feeling "nearly normal", and good to hear your ANC and WBC have improved! I read through the "ringworm drug" thread this morning and it seems your UCSF doc is not alone in thinking statins have anti cancer properties. So many drugs, so many theories! Wish there was more scientific evidence, and less speculation.
I've been feeling well enough to overdo to the point where I am sore all over. Time for a few days of rest for me.
0 -
Hi Jobur and friends- I'm doing relatively okay; thanks for asking. Still fighting the fatigue and back pain and struggling not to lose any more weight (about 32 pounds total now). Other than that, all other SE disappeared
Off to Amelia Island, FL on Wednesday and I can't wait! I'm going to push myself to do as much as I physically can; enjoy the beautiful weather and just have a good time with my children and grandchildren. Still taking the 7.5 dose of Affinitor....I don't think I will go back up to the 10mg. Scared of those SE returning. Jobur- when is your next scan? I pray that we all get stable (or better) results from this regimen.
Take care and I'll talk to you all soon!
Angie
0 -
Jobur, When I was put on Satins years ago, the pain and aches were dealbreakers. My pharmacist told me that Satins deplete CoQ10 from your body. She said that I should take CoQ10 as a supplement. You might want to research that.
0 -
Angie - So good to hear from you! Glad some of those ses have gone away. If only I could give you a couple of my extra pounds we would both be good, ha ha. Have a wonderful, memorable trip to Florida! Hope the days are sunny and not too hot while you enjoy time with your family.
Snooky - Thanks for the tip! A good pharmacist is a blessing. I was in the drug store today trying to find what I was looking for in the endless vitamins and supplements and for some reason the CoQ10 caught my eye. (Probably just because of all the 0 shapes in the label and my dim close vision.) I will check it out. Are you still on Ibrance/Fas? Best of luck to you whatever your current tx.
I had mo appointment and labs today. For the first time in my (almost) 5 years of mbc, my TMs are freaking me out. My CA-15 has always been within normal range. Between 7/18 and 12/18 my TMs jumped 10 points and PET showed 1st progression to liver and new bone mets. Since starting A/A, TMs had been ticking down a point or two every month. Today my CA-15 jumped 10 points from last month. Last PET April 1st showed mixed results. Liver tumor less active and smaller, but new mets in pelvis. Not due for another PET until July. I am usually not a worrier, but this jump came as a shock. Unfortunately, saw this on line after mo visit.
Best wishes to all.
0 -
jobur- so sorry to hear about your PET and TMs - I hope it is just fluctuations. The liver tumor being smaller seems like really good news! The TMs can fluctuate for other reasons. I am wondering if the cox2 inhibitors could help. How is your blood sugar and cholesterol doing?
My TMs fluctuate by the hundreds up and down- I watch trends.
0 -
Hi Nanci - Thanks for your reply. Are you still feeling good? Hope so!
My mo's assistant called yesterday to let me know I have a PET scheduled for May 21st. It wasn't supposed to be until the beginning of July, so apparently my TM jump alarmed my mo too. It is reassuring to know I am in good hands and she is keeping a close eye on lab results that come in after our visit. As much as I hate scans, this time I am happy to have it moved up.
0 -
Jobur- interesting to do them so close together! I hope they show the liver is shrinking causing the dying off of cancer and therefore the blip in your TMs.
0 -
question about the mouthwash- I was told to use the dexamethasone mouthwash four times per day for 2 months and then I could stop it. Did you guys just cold turkey stop it after 2 months or taper down? How did stopping it go? Do you still use it or get mouth sores?
Thanks! Blood work I a couple days - hoping all is normal this cycle.
Hugs
0 -
Nanci - Sorry I can't answer your question on the mouthwash, but I never used it. Just want to say hi and wish you good results on labs next week. Still feeling pretty good? Hope so!
0 -
NKB I stopped taking the mouth rinse cold turkey and didn’t have any trouble. Then after about two or three months I have just got a sore under my tongue so I’m taking the rinse again.
0 -
thanks for the information. I’ve started doing it 3 times per day and will taper to two I think. In about a week I will finish month 2- if my blood work today looks ok.
Hope AA users a all doing well.
0
