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All TopicsForum: IBC (Inflammatory Breast Cancer) → Topic: Anyone currently (2016) on Afinitor & Aromasin?

Topic: Anyone currently (2016) on Afinitor & Aromasin?

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Posted on: Oct 1, 2016 01:24PM

Key2 wrote:

I'm about to start Afinitor with Aromasin within two weeks...I have been reading so many negitive side effects on Afinitor and was wondering how many are currently using this drug and the results?? There really is not a lot of CURRENT information on Internet regarding this drug except horrible side effects from 2013?

Any remarks with using this drug and how long it did work using this drug?


Thanks so much for your help!!!


Kimba



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Oct 26, 2016 06:33PM mandymoo wrote:

Hi Kimba, I have been on A/A combo for almost 3 months now and it is working, so that is the main thing. Side effects for me are mouth ulcers!!!!! sore joints,and aches and pains. I have also gone off my food a bit. My initial IBC diagnosis was 15 December 2006 when I was 55. I was NED until May 2012 when I had bone mets and I was then prescribed Aromasin, but in November 2012, I had developed mets in my lungs, liver and brain. I went on to Xeloda and my organs were NED about a year or so later and the only progression was to my bones, (I have been on Denosumab since May 2012 as well). Xeloda worked for me for 44 months and in August this year I changed to Afinitor and Aromasin combo as my tumour markers had jumped quite a bit and my pleural effusion had also grown with small mets in both lungs. My tumour markers are already dropping and my breathing is a lot better.

Warm hugs

Mandy


"Don't give in to the disease" Dr Phil McGraw Dx 12/13/2006, IBC, 3cm, Stage IIIB, Grade 2, 11/22 nodes, ER+/PR+, HER2- Chemotherapy 12/28/2006 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 5/20/2007 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Dx 11/17/2012, IBC, Right, 3cm, Stage IV, metastasized to brain/bone/liver/lungs, Grade 2, 11/22 nodes, ER+/PR+, HER2- Chemotherapy 11/27/2012 Xeloda (capecitabine)
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Oct 27, 2016 08:45PM Key2 wrote:

Mandy

Thank you so much for letting me know it gives me hope too! I am starting tomorrow morning my three main pills which will be Synthroid in the morning then Afinitor. In the evening after dinner I will take the aroimisin since your suppose to take withfood. I'm a little nervous but am glad that I'm hearing some good news on this combo.

Do you take your Afinitor morning or evening? I heard taking the pill with a marshmallow or whip cream helps with the mouth sores...your thoughts?

Big hugs to you!

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Oct 28, 2016 04:31PM mandymoo wrote:

Kimba,

I take both my pills in the morning with my breakfast. I have not heard about taking it with a marshmallow or whipped cream and I will certainly try that as the mouth ulcers are awful. I have lost over 5 kilograms since I started taking the A/A combination, and I am very overweight, so I am thrilled about that. I thought that I would mention this as you are on Synthroid. (weight loss in approximately 30 percent of patients taking A/A combo).

I remember getting painful pimples on my scalp and other areas probably for the first month or so, but that has subsided. I also have a rash on one of my arms and my tummy, but they come and go. Overall, I am quite happy with this drug as it is kicking butt, but also the side effects are do-able and I know (hope) that the side effects will settle down some more when the dose gets reduced in December. (I am currently on the maximum dose.

Fingers crossed that it works for you as well, Kimba.

warm hugs

Mandy

"Don't give in to the disease" Dr Phil McGraw Dx 12/13/2006, IBC, 3cm, Stage IIIB, Grade 2, 11/22 nodes, ER+/PR+, HER2- Chemotherapy 12/28/2006 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 5/20/2007 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Dx 11/17/2012, IBC, Right, 3cm, Stage IV, metastasized to brain/bone/liver/lungs, Grade 2, 11/22 nodes, ER+/PR+, HER2- Chemotherapy 11/27/2012 Xeloda (capecitabine)
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Oct 28, 2016 10:14PM Key2 wrote:

Hi Mandy

Thank for the info! I have gained 40lbs since starting chemo my doctor told me the other day NOT to gain weight anymore. She never mention me losing weight on the A/A combo. I will do some research on this but I'm with you a little weight loss is a good thing. :-)

Just started my A/A today I will keep you posted and please let stay in touch if you don't mind.


Hugs


Kimba

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Oct 29, 2016 05:29PM mandymoo wrote:

Kimba, yes, that sounds like a good idea. However, I am away a lot for family reasons, so it may sometimes take up to a week to reply.

Good luck, I really hope that it kicks butt and that the side effects are minimal. I put on about 20lbs on Xeloda, but my oncologist told me not to worry about it and he would only start worrying if I was losing weight, haha. It seems that they are all different.

Warm hugs

Mandy xxx

"Don't give in to the disease" Dr Phil McGraw Dx 12/13/2006, IBC, 3cm, Stage IIIB, Grade 2, 11/22 nodes, ER+/PR+, HER2- Chemotherapy 12/28/2006 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 5/20/2007 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Dx 11/17/2012, IBC, Right, 3cm, Stage IV, metastasized to brain/bone/liver/lungs, Grade 2, 11/22 nodes, ER+/PR+, HER2- Chemotherapy 11/27/2012 Xeloda (capecitabine)
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Dec 16, 2016 11:09AM amarantha wrote:

HI Kimba and Mandymoo, I just found this thread. I am glad we have a thread for this. How are you both doing ? Yes I just got put on Afinitor and Aromasin. Took the first Afinitor last night. Not sure if it is the drugs or the emotional upheaval from the cancer returning, and those fatal words, "you will have to live with this", but I am feeling quite drained and joyless ... I am glad to see you have been living with it, and are still kicking. Glad to see it seems tolerable. Lets support each other. I am in France.

begin 5 wks rads + weekly Cisplatin, eventual mastectomy, right side. IBC recurrence with mets -bone, skin, lymph nodes (controlled by Halaven) (IBC originally in left breast, heavily treated and removed 2104)
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Dec 16, 2016 02:37PM Key2 wrote:

Hi

You will do fine in Afinitor just watch out for mouth sores and used the prescribed mouth wash from your doctor everyday! Also even if you have a slight cough let your doctor know!!

As for taking the Afinitor at night I changed to morning because I was getting real bad heart burn so I called the Ong. Pharmacy he suggested also to take in morning this way the drug can absorb and move within the body I was finding laying flat after taking a chemo pill did not digest well since I was only laying flat.

Hence heartburn went away for the most part. Maybe I get heart burn. Once a month.


Stay positive!


Kim

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Dec 18, 2016 12:02PM amarantha wrote:

Okay I am on day four. Vague chemo-like nausea and headache much of the time, and flu-like fatigue. Not liking this too much. I hope it gets better.

begin 5 wks rads + weekly Cisplatin, eventual mastectomy, right side. IBC recurrence with mets -bone, skin, lymph nodes (controlled by Halaven) (IBC originally in left breast, heavily treated and removed 2104)
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Dec 19, 2016 10:07AM Key2 wrote:

Hi


Hope your feeling better!!! You should always let your doctor know what your symptoms are...I always do they are the best judge of any side effects everyone is differant! I never had any of the side effects you have so write a emaiil to let your doctor know if you still feel the same. They might want to adjust you meds a little,


Feel better soon!! Let us know how your doing,,,


Kim

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Dec 19, 2016 01:11PM amarantha wrote:

Thank you Kim ! So great that you are here. I feel much much better today. Are you back on Afinitor ?

begin 5 wks rads + weekly Cisplatin, eventual mastectomy, right side. IBC recurrence with mets -bone, skin, lymph nodes (controlled by Halaven) (IBC originally in left breast, heavily treated and removed 2104)
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Dec 19, 2016 03:09PM Key2 wrote:

OH Great glad to hear!!!

No I'm waiting on the doctor to let me know when to go back on Afinitor I don't think Afinitor was what gave me the lung infection I think it is Aromasin I have been off Afinitor for 3 weeks but have been taking Aromasin.

Keep you posted!!!



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Dec 21, 2016 08:56AM amarantha wrote:

On the Afinitor literature it says one in ten people on it will get a lung infection. That seems pretty dangerous. But I guess we would not be on it if the benefits were not to outweigh the risks. Are you healed ? A lung infection is a way of saying pneumonia. Not a benign little thing. Please tell me you are better !

begin 5 wks rads + weekly Cisplatin, eventual mastectomy, right side. IBC recurrence with mets -bone, skin, lymph nodes (controlled by Halaven) (IBC originally in left breast, heavily treated and removed 2104)
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Dec 22, 2016 10:59AM Key2 wrote:

Hi


Starred Afinitor again yesterday 5mg so I will know if I'm going to be in that percentage or not within a few days :-( I'm just not sure that my lungs like the Aromasin I think it is more that drug for me then Afinitor but my doctor says no it's the Afinitor!

How are you feeling? Also we have another Afinitor tread as I had mention that others are on with Afinitor? Afinitor/Aromasin 2013 so you can read up on info there as well...


Kim



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Dec 23, 2016 03:11AM - edited Dec 23, 2016 03:13AM by amarantha

Well let's put it this way, Afinitor is so notorious for causing lung infections that accompanying my prescription for Afinitor, is a prescription for a lung scan - ready-to-go at the first sign of trouble.

I did look up the other thread, which you sent me too, very grateful ! I suppose we could continue on there but I like our new thread Happy

As for me, well I have a continual head-ache now so that's not good. Grrrrr. I have my first weekly phone meeting with the nurses whose job it is to follow the oral therapy people ! I am a bit freaked out that the redness is spreading upwards towards my neck on the left side, and that the tissue is all hard like cardboard, and the cardboard is gaining on me. Not sure this drug is doing the trick. I'm waiting for them to respond to my email about that. Probably today.

begin 5 wks rads + weekly Cisplatin, eventual mastectomy, right side. IBC recurrence with mets -bone, skin, lymph nodes (controlled by Halaven) (IBC originally in left breast, heavily treated and removed 2104)
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Dec 23, 2016 09:16AM Key2 wrote:

It is alway a good idea to have a lung doctor and visit them every few months!! Also I take my temperature 3 times a day now! I went to the doctor yesterday to do my blood work and everything is good however I had a low grade fever so they told me to take my temperature a couple times a day to watch that... since then it has gone down.

Not sure how your appointments work in France but don't you go to the doctor every month and get blood work when you start any new drug?? I think you should so they can track you blood counts.....

How are you feeling? I restarted 5mf Afinitor 3 days ago and I feel much better on the inside....strange but I can feel the drug working for me but I think my lungs do not like the drug!!!


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Dec 23, 2016 06:07PM amarantha wrote:

I sure hope the lung thing does not come back for you. Scary ! Glad you are being vigiliant with the temperature, and I am glad you're feeling better. I feel much better tonight ! Three day headache finally gone, and fatigue gone too. I have been sleeping waaaaaaay more. Yes, indeed with this new treatment I will have blood tests every two weeks. A traveling nurse comes to my house to draw blood, pretty good, right ? The regional cancer center had all the information, appointments, prescriptions, instructions, organised for me in a binder. They are so all encompassingly supportive ! Today they called for the once weekly phone call, and responded to my email about the cardboard skin creeping up, and offered me an appointment with a doctor the day after Christmas, for which I am really grateful - will not have to worry for the next two weeks. I hope you manage to enjoy the holidays somewhat despite all of this !

begin 5 wks rads + weekly Cisplatin, eventual mastectomy, right side. IBC recurrence with mets -bone, skin, lymph nodes (controlled by Halaven) (IBC originally in left breast, heavily treated and removed 2104)
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Jan 1, 2017 08:10AM amarantha wrote:

Horrible mouth sores on left side of mouth, gums around bottom molars and the whole left cheek ... its like my teeth are ripping up my cheek. I can hardly eat. And bunches of yucky pimples on nose. arrrrgh. The meeting with oncologist (in four days ) cannot come soon enough.


begin 5 wks rads + weekly Cisplatin, eventual mastectomy, right side. IBC recurrence with mets -bone, skin, lymph nodes (controlled by Halaven) (IBC originally in left breast, heavily treated and removed 2104)
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Jan 1, 2017 06:51PM Key2 wrote:

I hope that you had gotten that mouth wash we were talking about?? I think they might adjust you to a lower dose until,sores go away!

So sorry that you got the mouth sores :-( I never got them just the coughing and lung issues but mine seems to be under control at a lower dose.

I am going to the doctor on January 11 so I will see if they keep me in this or not...

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Jan 2, 2017 03:07AM - edited Jan 2, 2017 03:08AM by amarantha

In France we don't have the same drugs, but they have given me from the beginning glass bottles of a solution of bicarbonate of soda into which I am to mix four tablets of an anti-stomach-ulcer drug. That mixture would certainly be more effective it I used it the recommended six times a day. LOL. I got the sores in an unmentionable place too, sex was already just about impossible, but now it is severely impossible.

begin 5 wks rads + weekly Cisplatin, eventual mastectomy, right side. IBC recurrence with mets -bone, skin, lymph nodes (controlled by Halaven) (IBC originally in left breast, heavily treated and removed 2104)
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Mar 17, 2018 07:10AM Soapergirl wrote:

Maybe I can offer some words of encouragement. I'm going into my 3rd year of using Afinitor. Other than some fluid retention in my feet, and a touch of diabetes (not critical), I'm doing fine. I went into stability shortly after starting Afinitor in December 2015. Oh, I did start out with some digestive problems too. Diarrhea and malabsorption syndrome, causing me to lose weight, but it all disappeared when I started taking a good quality probiotic twice a day! Since taking Afinitor, no infections other than coming down with a bad flu last winter. I'm doing fine, and side effects are minimal - best of all -- since taking Afinitor - there's been no cancer growth or spread. Vital organs remain healthy and cancer free! I am considered completely stable and will turn this 70 this fall. (I'm starting to approach a normal, average life span and doing well!) Good luck to all!

Happy

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Mar 27, 2018 07:43PM NatalieJane wrote:

Thanks for the words of encouragement My oncologist is suggesting we change to afinitor/ aromasin. I have been having faslodex shots for 2.5 years, added Ibrance after first year of shots. My lymph nodes have started growing so my doctor states it's time to change.

My question is I haven't started yet but I have a vacation planned (cruise) Does the side affects start immediately? After reading the post I'm considering waiting until I return from vacation before starting the new meds (afinitor/ aromasin)

What are your thoughts/suggestions ? You didn't state having any issues?

BTW I'm new to this thread so any other suggestion will be great.

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Mar 27, 2018 09:53PM Moderators wrote:

Welcome, NatalieJane! We're glad you've joined our community, and hope you find this to be a supportive place. Everyone will respond differently to treatments, but if you're afraid of experiencing side-effects while you're on your cruise and your doctors are ok with you postponing until you return, we think that sounds like a great option!

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Jul 10, 2018 04:15PM Kattysmith wrote:

Soapergirl, I'm glad to see something positive about Afinitor as I'm about to start it, and have seen many drawbacks both in terms of efficacy and horrible SEs. I was stable on Ibrance / Letrozole for two years, but developed liver mets this spring. Complicating the matter is that the liver biopsy showed two types of breast cancer cells, one a high-grade with endocrine features. The chemo I started was standard of care for this type, but gave me minimal benefit when it was expected to have a more dramatic effect, plus I had a couple of other areas of uptake on my PET, so now my oncologist suspects that the other type of tumor is predominate. So, back I go to hormonals for a couple of months before doing another scan. He is prescribing the mouthwash to help prevent mouth sores. I had them briefly while on AC when i first started treatment in November 2015 for metastatic BC stage 4. Do NOT want them again!

First diagnosed borderline Stage 2 IDC, left breast in 2003. No problems until a surprise (!) Stage IV recurrence in 2015! In addition to treatments listed below, I started monthly injections of Xgeva for bone support in July 2016. Dx 10/23/2015, Left, Stage IV, metastasized to other, Grade 3, 0/3 nodes, ER+, HER2- Hormonal Therapy 2/5/2016 Femara (letrozole) Targeted Therapy 2/5/2016 Ibrance (palbociclib)

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