Afinitor/Aromasin
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50sgirl, NKB, moonala, others
How are you all doing?
I am on 10mg Afinitor, faslodex and sandostatin. I get my special pet scan Tuesday to see if it and the recent y90 are working. Scanxiety. Hoping tumors are shrinking plus I want it to light up for the somatostatin receptors so that I qualify for some trials
Dee
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Hi AlabamaDee! I have not been feeling all that great. Loss of appetite, weak, fatigue and diarrhea. MO lowered my dose to 7.5 today and I am hoping that will minimize these SE's. Seems like things really ramped up here in the last few months. I thought my body would adjust but it really hasn't so MO says "oooookay lower dose." So I am on 7.5 and we will see how that goes for a bit. How about you???
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moonala
My symptoms aren’t too bad on 10mg but my low WBC and liver numbers are concerning on Tuesday. I get bloodwork checked again next week. I am hoping to stay on this dose. I got the dotatate PETscan and only the largest tumors lit up. So I’m hoping all the little tumors are gone. Getting a regular PET and MRI next month to verify.
Hoping you get some relief from the lower dose.
Dee
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Hey Moomala,
I have to say the last couple of weeks a fatigue has set in that I can hardly believe! Things were going along great and I now can't get through the day without a nap, sometimes 2. Is this what you have been experiencing? I could sleep all day!
TM's 15.3 and 27.29 are both trending downward for 3 months running. Good percentages each month! My CEA is stable with a little upward motion. This may be the Afinitor causing lung inflammation. We are watching it. Almost a year on the meds!
Hope you are doing well!
Stacey
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Stacey
Sorry about the fatigue. It can be grueling. Glad TM are trending down. It helps to have something positive.
Dee
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Hi Stacey and Dee,
Yes on the fatigue. Mine started in December. I started this combo in October and was just ducky for a few months and then kaboom. One side effect after another. I'm on day 4 of the lower dose, and once again have zero appetite and my mouth tastes like it's full of salt all the time. Last time it was metallic taste. This only lasted for a few days though so I am hoping this is temporary. I can deal with splitting nails and dry skin but I have lost a lot of weight and don't feel much energy. I just realized I am on month six of the drug so I suppose that's good but I'm not too sure about these SEs anymore. Same for me on the rest periods. I need a few per day - it's hard when I'm still working - but I manage to accomplish a little siesta each day.
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Oh! About TMS - CA27.29 dropped huge on this combo. I was at 244 and am now at 151, the lowest I've been ever on this combo. My CEA jumped up by just 4 its so I'm considering this good support information for stability on this combo. My PET scan in February supports this too. So hurray but I'm for sure a lot more tired, and a bit annoyed that the side effects won't stop coming around to bother me!
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moonala
Great news on the tests feedback. I hope you can eat something so you can fight that fatigue better. hugs
Dee
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question to those on Afinitor. Did your blood sugar and cholesterol spike? What did your MO advise? I am dealing with both.
Dee
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Hi Dee! I have not had my cholesterol checked since starting Afinitor. My glucose was 153 two weeks ago. That's high but MO didn't seem worried enough to do anything.
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Hi Dee,
Hope you had a nice weekend! Yes, my glucose rose. I asked for and was given Metformin to help fight this. I am normally in normal range now. Yes, my cholesterol rose, it was at 240. I am a runner and a vegetarian, I have always had low cholesterol. I am not doing anything about this. Another interesting thing that has happened it I note my resting heart rate is higher. I assume it is the drug, I keep forgetting to ask. I have also had periodic bad rashes, but other than that, this drug combo is very easy.
Good Luck!
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thanks for the help about Glucose and Cholesterol. I was thinking about adding Lipitor but it is processed through the liver so I may hold off since that is where my tumors are and the liver numbers are a little off. I probably don’t need metformin yet I am just a point or 2 above normal with fasting
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Stacey my resting heart rate is higher too. I was more athletic a few years ago and today I can do far far less exercise than before. But that's what used to keep my resting heart rate lower. Now it's 80's and into the 90's at times.
I'm also apparently on a weight loss kick. I swear in the 7 months I've been on this drug I have gone through every side effect. I had loss of appetite from dry mouth the last few months. Dry mouth is better, not awesome but better. Appetite is okay. I've never been a super big eater but at least I'm eating now. But gosh am I losing weight. The dietician wants me eating six small meals a day and a total of 60 mg protein per day. Well that is a LOT of protein and it fills me up immensely. I feel like I'm forcing food a lot of the time so I went back to three meals a day with a smoothie and protein powder in the afternoon. My clothes don't fit me and people are noticing. Ugh.
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Moomala,
No one has ever mentioned the resting heart race increase as a side effect to me, has anyone ever told you about this?
My weight has stabilized, I am not losing anymore but I can't seem to gain either. Regarding your weight, I understand the protein focus, but how about adding a little healthy fat. It's high in calories and less filling. You won't feel so stuffed all the time. Handfuls of nuts (raw if you can stand it), avocado, dark chocolate, tomatoes and mozzarella with lots of olive oil and sea salt, chia seed pudding (i make mine with chocolate ripple milk), I try to over-use good olive oil on everything possible to boost the calories. 1 TBSP is 100 calories. It's easy to make it add up!
I understand the clothes don't fit anymore saga! I don't like that people notice, WE KNOW, no need to remind us! Is the weather warming up there yet? Could you hide under some flowy type dresses?
I went for a second opinion today Angeles Clinic here in Los Angeles. Very nice young doctor, really up on the latest studies. One thing he did share with me is that he would not take me off Afinitor right away, he showed me a study that there is some merit to switching from the Aromasin in the protcol, back to fulvestrant. He also said that Piqray is a hard drug, but easier on more fit, younger women. He urged me to have the bone scan now rahter than wait another 2 weeks for another TM draw. I have scheduled it for Friday. I am on the fence about changing oncologists, my family doesn't want me to, and I am a little nervous about it. Current plan is to do the bone scan, see where I am, and discuss the options with my current MO. Any thoughts on making a change?
When do you go back to the MO?
Best,
Stacey
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No-one has ever told me about the resting heart rate being an issue. Interesting. I'm so quick to blame things on Afinitor, like the acne on my face right now. Again - I have been through every side effect over the last seven months ugh. But I' also on other drugs like Gabapentin and of course Aromasin ( I hate this drug more than Afinitor)
I wonder where your second opinion gets the information the P is easier on younger, more fit women. Most of my MO's experience is with her three patients on P so maybe your MO is basing this on what he is seeing in his practice? Still it's an interesting idea. Now if only I could turn back the clock and get myself back to my usual fitness level hmmmmm...
The Piqray group here is quiet but the FB group is pretty active. I'd say that most people are having a terrible time, but then I always think the people who are doing ok just aren't out there talking about it. I have a friend here who was on it and stopped after 9 weeks of vomiting.
Does this new MO base the suggestion for a bone scan on your rising TMs? Or on his ideas about Piqray/Fulvestrant showing better results. We he be open to Fulvestrant alone and then perhaps adding Piqray later? This is going to be super interesting because I'm anticipating this same convo with my MO in two weeks. I get my CT and Nuclear bone scan next Thursday. My MO is super pushy on the Piqray. I wonder why when so few people can stay on it. And again she only has three patients on it. So I am super leery still.
I think it is perfectly okay to move to an MO who aligns with your views on certain things. My MO is very hands-off, facts only, not feely person. I like it but i wish she were a bit more feely.
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hi friends,
I’ve been on Afinitor (with Fulvestrant) for two months now. I’ve been noticing shortness of breath recently - not terrible, but on physical exertion or when I talk too much!
Is this familiar to anyone?
Thanks,
Led
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Hi ledascout. I feel like the queen of Afinitor side effects. I have had so many. I started in October and started experiencing shortness of breath about two months in. It's a side effect for sure but of course always something to report to your doctor.
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Moomala,
I recently went through a little acne, it is the Afinitor! LOL! There is no end to the fun of this drug, and the disease in general!
When we first started discussing Piqray and I made a comment, that I have heard it is awful. He made a face and said some of his patients do ok on it, the younger fitter patients. The doctors know this drug is tough! I will say, we can always try it and stop it if it is not tenable. Vomiting for 9 weeks, I can not imagine...
Yes, he did not see any reason to wait on the next round of TM's for the bone scan. Get the information so we know if a change needs to be made. He recommended continuing the Afinitor, stopping the Aromasin and going back on the Fulvestrant. He brought up a study for me to review. I am going tomorrow. If we still have a no progression, he thinks we can wait and watch the TM's. If they keep rising, I will have a PET. He also looked at my Foundation One and told me that there are off label drugs (for other cancers) for 2 of my mutations, immunotherapy likely not an option, Piqray, and a phase 2 clinical trial that they are doing that delivers the chemotherapy into the cancer cell at a greater rate than the other cells because of a particular pathway. Alas, he did say, exhaust every therapy down to the last day... And, keep exercising as long as I am able. Of course, my lifelong exercising and healthy eating didn't keep me out of this mess! Maybe I should eat french fries and sit on the couch?!
My current MO is very touchy-feely and the office support staff is great, but I am feeling like I want a young ass-kicker as a partner. I am going to wait and see what unfolds post bone scan. I will keep you posted. Ask your MO about a switch from Aromasin to Fulvestrant and a little more time on Afinitor. Google the study.
Have a nice weekend!
Stacey
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Ledascout,
I am on the A/A protocol but have had a little shortness of breath as a side effect. It has not lasted, nor has anything shown on in my lungs on my scans. However, I think Afinitor can be hard on the lungs, tell your MO.
Hang in there!
Stacey
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I like this idea of the fulvestrant Stacey. Even though I'm still having things pop up with Afinitor, I could see myself switching from Aromasin to Fulvestrant. I have scans next Thursday and then a visit with MO in person the following Thursday. I don't think she is anxious to remove me from Afinitor just yet, even though she keeps bringing up the Piqray. My TM's dropped like a rock and as soon as she lowered my dose to 7.5 the TMs began to go up. So I will expect to hear that she might want me to go back to 10 on Afinitor OR switch things over to Piqray. I found the study you were referencing I think.
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Hi Moomala,
Maybe go back to 10mg Afinitor first?! Goal is to stay on these protocols long as possible.
Had the bone scan today. I imagine I will hear something Monday. I feel so wrung our by this. Cried some tears today...
Will let you know.
Have a nice weekend!
Stacey
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Hi Moomala,
My MO called me yesterday, when I saw her name come up on my phone, I was sure it must be bad. The bone scan is stable, she is concerned with my CEA number jumping 5 points. We are going to run the TM’s again the 11th. If it is up again, I will have a PET scan.
Curious to hear what your MO thinks of the CEA numbers.
Hope you had a nice weekend and are feeling well!
stacey0 -
(cross posting from Liver mets)
MY Great news! 🙌🏻 RESPONSE AND SHRINKAGE of current liver tumors and they did not light up on PET which means they are not active. These are the ones that had Y-90 and bland embolization. 1 small lung nodule weakly lit up that was seen on previous MRI- we will be watching it.
Home MO recommends staying on current medications. Afinitor/Faslodex/Sandostatin.So good to be able to say that for the first time! 😉We will need labs to watch WBC and ANC, probably weekly.
Sending scans to MD Anderson and will have video call with her after she reviews them. Their reports are much more detailed than my home clinic. So I am hoping those diffuse small mets that were previously reported on MRI andCT are just plain gone since nothing lit up Or showed beside the one in the lung.
Next scans in 3 months. Hopefully in TX but we will be smart.
PRAISE GOD. This is a such a joy to report to you all.
💃🏻💃🏻💃🏻💃🏻💃🏻💃🏻HAPPY DANCE
Now COVID has to go so I can see my kids and grandbaby again.
Dee
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That's awesome news Dee! I'm so happy to hear this I'm smiling after a really yucky day at work. Hurray!!!!!!
My scans are tomorrow - wish me luck!
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I will have my CT and Bone scan tomorrow too! Will see my Onc on next Tuesday.
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Dee, Congratulations on the excellent scan!!! Thanks for sharing your very joyous news! As a fellow liver metster, I'm thrilled that your Y-90 and bland embolization appear to have been very successful! I hope that your happy dance will last for a VERY long time! Theresa
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Moonala and Cling- wishing you peace while you wait and great results on your scans. No one can truly know the scanziety we face as metastatic.
Dee
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Dee, that's terrific news! Hoping you will get to love on your grandchildren soon as well!
Moomala, thought of you this morning in my meditation. I hope your scans went well and the results are positive.
Cling, I hope your scans went well and the results are positive too!
Focusing on good news for all during these strangest of days.
-Stacey
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Hi All! I had some progression on my scans but not enough to change medications at this point. Still, my MO took me off Afinitor. The diarrhea, poor appetite and weight loss have gotten to be too much. I had an epic episode of D and fatigue this weekend and was in bed for two days. So I'm off. I start fulvestrant alone for a few weeks shortly after a little break to get my strength back and then ugh the dreaded Piqray. She's going to layer it up from the lowest dose but she told me now to think about it for now since she is going to keep me on the fulvestrant alone for a little while. If Piqray makes things start up again I will be off that too and she is okay with that. It was great not to take that pill this morning. I have had a rough time of things on Afinitor since December. She said I should start feeling better in a few days, thank goodness. So I'm not sorry but I am a litlte worried about the Piqray. Still, I'll try it and if things go south I can move on to the next drug.
Best wishes everyone!
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Hi Moomala,
I so hope that getting off the Afinitor ends the diarrhea, it can be so debilitating! A few days without it and I bet you will begin to feel your strength -physical and mental- return.
I had my blood work yesterday, looks fine overall. TM's: CEA rose again, another almost 3 points, 15.3 came down, still waiting on 27.29. My CT and Bone Scan are stable, or a bit improved, with the exception of my degenerating left sacroiliac joint which seems to be getting worse, 40 years of running seems to be the consensus. I scheduled a PET this morning for Monday.
I have read that many people start Metformin with Piqray to help with the blood sugar issues, which might in turn help with the diarrhea. Ask about this. I take the extended release version twice a day, we started this when the Afinitor made my glucose rise.
Keep us posted. We are thinking of you and sending the feel better vibes!
Best
Stacey
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