I've just done my first 4 weeks on this drug combination after 18 cycles of ibrance 125mg and faslodex.
Not to pull punches it's been quite an awful month. I've felt really ill, all the pain is back in my hips and back, mouth ulcers made worse by a dental infection, headaches, upset tummy, nausea and horrible fatigue and those are the highlights.
I saw the registrar last week (another new one). He was surprised I'm been prescribed these drugs as he said they weren't used anymore because of the side effects but he was amazed I'd had so few and was so well.
The oncologist had said that the only alternative was intravenous taxol, which I don't want yet.
Are the side effects likely to improve? Any tips for improving them? I take my tablets with my evening meal. As you can probably tell I'm feeling a bit fed up and feel like throwing the towel in - which isn't like me at all!
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Julie2233
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Julie, I'm sorry it's been such a tough month. These are a lot of side effects! I can't help you with advice about Afinitor/Examestane, but I remember your previous post listed the oral chemo Xeloda as another possible option. I just want to say here again how pleased I am after 4 months on it. Very minor foot issues, no other side effects and my cancer marker dropped almost 400 points in three months. Since Xeloda is metabolized in the liver it may be especially effective against liver mets. I never thought I'd be so happy being on a chemo drug but so far Xeloda has been great. I take it 7 days on, 7 days off too, instead of 14 on, 7 off. I think this helps minimize side effects.
It will be wonderful if you can get good results and fewer side effects with your current regime, but I just wanted to mention this option in case you decide to change.
Hi, I wrote a response last night and it's disappeared this morning!
I'm so glad to hear that you are doing well on xeloda 😊
The oncologist said I can have xeloda after I've had taxol. I know that taxol is effective for liver mets but I had a bad time on intravenous chemo last time and I know this one is easier but I really don't feel ready for it again yet
I was on the Afinitor/Exemestane combination for 2 years after Letrozole. Exemestane 25mg. Afinitor 5mg for the first year, then gradually increased to 7.5mg over the second year. My oncologist told me that is was rare to tolerate 10mg of Afinitor. Since you're having so many side effects, you might want to discuss a reduction of the Afinitor dose.
I wish I knew, but I don't. I can only speak about my experience. For one year on 5mg, there was initial reduction of some nodules in the first few months, then stable for the remaining part on the year. When one lung nodule increased in size after one year, my oncologist increased the dose slightly (started with 7.5mg every third day, 5mg the other two days) until I was 7.5mg daily. I continued to do well for the second year, but had to stop because the 7.5mg daily caused inflammation of my lung lining.
One other note about dosing...I am being treated at Memorial Sloan Kettering. I went for a second opinion at Weill Cornell when the Afinitor/Exemestane combo was suggested. Weill Cornell agreed with the treatment, but suggested starting at 2.5mg daily because of the side effects. I did 2.5mg for a week, then switched to 5.0mg daily. One thing I didn't mention about the first year was that my oncologist increased my dose to 7.5mg after one month of 5.0mg, but I couldn't tolerate it - liver enzymes increased dramatically. She took me off for one month before returning to 5mg per day. Ultimately, the gradual increase to 7.5mg during the second year worked for me.
Sorry for the long, detailed response. I just wanted to give you as much info as I had from my experience regarding dosing. Of all my treatments, Afinitor was the most difficult with regard to side effects. By the way, I agree with MacroMom about Xeloda. I am on it now. It's been the easiest of my treatments. I had issues with my feet (hand/foot syndrome), but that was rectified after my oncologist reduced my dose.
I wish you well with your new treatment. There are remedies for the mouth sores, which I'm sure your oncologist has discussed with you. I found that when I avoided certain foods (spicy, acidic), I did much better.
Thank you so much for your reply, it's really interesting and useful. I've been started at 10mg and feel like I've been hit by a brick wall. I will talk to him about reducing the dose and see what his opinion is.
I'm avoiding most food at the moment, the tooth is better and the ulcers healed but I have no appetite, food tastes so strange when I do eat and then I spend 5 hrs feeling horribly sick. I've lost 7lbs in 3 weeks! Luckily I really need to lose a few pounds, this is the first meds I've had in 3yrs which haven't increased my appetite! So at least there is a silver lining! 😊
I am considering, once some insurance plans are completed and finalized, of switching over to Memorial Sloan. I had a friend who recently told me she had the same onco I have now and, like me, find her a bit flaky and forgetful so she transferred over to Memorial Sloan. Plus I know two men that had cancer that also choose Memorial Sloan. I hate the whole changing over again but I am seriously considering it bc I am losing faith in my onco. She is nice but she is forgetful and I think she has too many patients and I feel like I have to remind her every month why I am there and refresh her on what happened at my last visit.
I live in Brooklyn so it would not be hard for me to go to NY. Waiting for approval on Medicaid in addition to being on Medicare, so then I would get free car service there and back to New York City. I am not up for the commute anyway as mine spread to my lungs and stairs I can barely do. But if approved for Medicaid (which I am told I would be but still waiting for the actual decision), I then get car service to any doctors appt. I have as long as they accept medicaid. So I would then go because I would not want to do the train commute. I did that long enough for working and it was the worst thing about working in the City.
I actually didn't ask her who her onco was. She was a stage ii, had chemo, radiation, then breast removal and is now on tamoxifen I think for the next 10 years. She just mentioned when I told her who my onco was at Maimonides that that was her onco also. She said nothing at the time about her. But I was annoyed with my onco at my last visit (and made it clear to my onco) and that is when my friend told me that she too found her a bit flaky and that she had transferred to Sloan Kettering. I guess she did not want to mention it to me when I first started seeing my present onco. Her brother had cancer and was also there and another friend who had a stage iii reoccurrence was also treated at Sloan Kettering. I would have to find one at Sloan that accepts Medicare/Medicaid.
I never asked who they went to. Just the thought of having to go to a new onco, and get used to the way that cancer center does things makes me tired. I have already switched once. So I will see how things go. Since this is treatment for life, I need to feel more comfortable about my onco's ability and lately due to some issues, I am losing confidence in her.
I understand what it's like to not have confidence/trust in your oncologist. My original oncologist was OK, but I was never able to fully trust her information and judgement. I admit, I was naive and in a state of panic when I was choosing an oncologist. How I ended up with my oncologist is a long story, but if I could do things over, I would have done more research before choosing.
I also understand your concern about switching facilities. Having MBC is exhausting. Adding a facility switch makes things that much more exhausting, but if you can find an oncologist that you trust, it's worth it. My switch from MSK NYC to MSK Bergen was not as big a deal, but I was anxious about the whole thing. One year later, I am so relieved that I made the switch.
I hope things work out for you with Medicaid. Getting a car service to your appointments would really make a difference.
Let me know if I can help you in anyway with your decision to switch to MSK. A male oncologist from MSK NYC spoke at the Living Beyond Breast Cancer (for MBC) conference this past spring in Philadelphia. He was very impressive. The whole audience responded well to him. I have no first hand knowledge of his skills, knowledge, or judgement, but he might be worth considering. I don't remember his name, but I can easily find it.
When I went for my last visit, my onco said to me So how are we feeling? I said well, I am waiting to get the results of my CT scan on Thursday regarding the new cancer tumor they found and whether it has changed. She looked startled (like she forgot) and then she was playing with her computer and made the remark that Oh, they did not supply it to me yet. I am going to have to complain to the Head of Radiology. She then said if you want to wait an hour and a half more I can get it and then we can talk and I said No. I do not want to wait around another hour and half. I had not eaten that day and still had to get my butt shots and I was tired and since I am on Medicare now I have to take a bus and a train. I dont drive and I have no family and no friends that live in Brooklyn anymore. So I told her when you get them call me and let me know if anything is up. If not, I will assume it is stable and will see you next month.
Then on a lark a week later I emailed her saying since you did not contact me I assume that everything is stable. She THEN replied that the CT scan showed two spots on my spine that may or may NOT be breast cancer mets. She then said that it was referenced in a prior CT scan but that they had not made a big deal about it. She said this time they referenced it more. She said some radiologists are more detailed.
I was angry (bc she has lied in some instances blaming staffing issues.) I said if she uses that term again, I will know she is lying. Of course when she said she did not have the results due to "staffing issues" I thought okay enough is enough.
I believe she had the CT scan on her computer. Because why all of a sudden could I wait and get the results. What I am sure happened is that I had the CT scan on a Thursday, she does not work on Fridays and my appt. was on Monday at 2 pm.
I think she realized she never reviewed it. So she pretended that she did not get it and asked if I wanted to wait an hour and a half so she could see her other patients, and then review it and get back to me.
I told her I am not happy with your response that it MAY or MAY not be breast mets on my spine (I was concerned about the new cancer tumor.) I said I am losing confidence in this whole process. She then said she did not want to continue the discussion through email and would call me the next morning. I know for sure in my heart that she had the report but had not reviewed it. (A similar thing happened once before).
Then when she calls me I said either it is or is not breast mets. She then said they were breast mets (see what I mean) but that the radiologists said they seem stable and are not doing anything. I said to her well going forward, I now want copies of all my CT scans. She does not load them up on the patient portal. So she is not on top of things.
It's just exhausting because I have nobody so I always go by myself. I should hear within this week (the lady at Medicaid said she was going to expedite it) so then I will get the free car service back which is a godsend as I don't drive and bc its in my lungs, walking for long distances and stairs are hard.
I was upset with her and let her know it. She is not really on top of things. I think she has too many patients. Its funny how my friend, until I complained about the onco who she had been to but for stage ii, not stage iv) said I found her a bit flaky myself and transferred to Sloan Kettering. She did not want to say anything while I was going to her.
I am waiting to get approval so that I have dual coverage of both Medicare as my primary insurer and Medicaid as my secondary. The best thing about this cancer center is the social workers, attorneys, and nurse navigators that have helped me so much. I would like to stay there but with another onco but that would make her look bad and not sure how her colleagues would react so it would be best if I made a total move.
I will reach out to you if I make that decision. Thanks so much!
I can understand why you want to change your oncologist. Her responses to your inquiries are awful. It's inexcusable that you had to call her about your CTscan results.
It's a shame that you feel you can't change oncologists within your facility especially since you find all the other supports (nurses, social worker, etc) so accommodating. I can relate because I felt the same way a few years ago when I was losing trust in my oncologist.
Let me ask you - would you feel comfortable talking with the social worker about your situation? I'm not sure how I came to this understanding, but I always believed that once I chose an oncologist within MSK, I couldn't change. It turns out it's not true. I get it that you would feel uncomfortable and how you don't want to make your current oncologist look bad, but it just doesn't seem right. This is MBC and it's your life in her hands.
I hope you resolve changing oncologists or changing facilities, along with Medicaid. You deserve some peace and support.
Well, the onco center is all located on one floor and all the oncos have offices in the same area. I do not dislike her as a person and if this was a life-long issue, I would probably deal with her. On my side of things, she may have taken what I said literally. From the beginning when I started seeing these women stress on other boards about their markers and they kept charts and made power point presentations, I said to her Listen, I don't need all that paperwork. I just need to know its working or its not working. And when I was so stressed out with medicaid and changing to medicare, I would say to her Right now, I am so stressed out with other things going on right now, that cancer is so on the bottom of my list. I also told her I need you to tell me to my face when anything looks different. I will never cry and fall apart. I have no family, no kids, siblings so I am probably unlike most of your patients who are fighting so hard bc they want to see their children or grandchildren grow up. I said the minute it becomes difficult or the side effects become too much, I myself will stop the treatment and live my life. So I may have given her permission in this sense but I did tell her on the phone now I want copies of my CT scans. I really never ever get stressed about scans or the results or the fact that it may have spread to my bones now. I just don't worry. I am going to be 60 in a few months and I have other things I am stressed about that for me cancer is more of an inconvenience but then I am not in pain, just discomfort.
I would not want to embarrass her by asking for another onco. They would want to know why and I would not want her to be humiliated so I would rather pack up and go. Once I get this medicaid approval, then I am set for life no matter what happens and I can then leave Maimonides.
Your response makes total sense. I understand how you feel. You must be a very kind person to be thinking of your oncologist's feelings. I truly hope all goes well with Medicaid so you can move on.
Be careful with Exemestane. It caused vision and balance problems with me. I have two oncologists and neither was aware of this possible side-effect. I am so angry as I have a very difficult time with my balance and it may be for life. Doctors need to be more aware of the side-effects of these drugs that THEY order! Also, I wonder if adding Metformin would help you. I hope you feel better!
The problem with that is now only 3-hour glucose testing is available and that does not show if you are a borderline diabetic. I had the 8-hour, which does show it, right before they stopped using it in 1975. The diabetic specialist told me that it was a shame because so many people that are borderline diabetics would not know, because the 3-hour doesn't show it. My glucose numbers show up normal now too, but I know that they are not. I also had a brother that was a Type I diabetic, and another who is a Type II. Is it in your DNA? I am estrogen and progesterone positive, HER2-, yet I didn't respond to Fluvestrant and Ibrance, nor the aromastose inhibitors. Another woman with my same cancer on this site also didn't respond that was told she was a borderline diabetic. I feel for us that we need the Metformin, either alone, which I am trying for now, or with other treatment.
I'm at moderate risk of type 2 diabetes, I have a bmi of 26 and my grandfather, father and brother all developed it despite having normal BMIs. Close family members with type 2 increase the odds of you getting it.
I now have a blood glucose test done with my bloods and I had a HbA1c test which looks at your blood sugar over the previous 3 months. I have had the overnight fasting test in the past which also came back as normal. I am tempted to,ask my brother to send me his unused metformin 🙂
As my diabetic specialist told me in 1975, the 3-hour testing, and in my heart, I feel the current testing, doesn't show it either. I am not a doctor, obviously, but I feel that if you have diabetes in your family, that you should be on Metformin. My oncologist told me that he was fine with me being on it. He wants me on Xeloda now too, though so far, Fluvestrant and Ibrance have not worked. It also could make me dizzier than I am now, which is not acceptable to me. If I get dizzier, than I am now, I will not be able to function. My quality of life is important. Some researchers believe there is a connection between diabetes and cancer. If there is, then it only makes sense that the Metformin gets rid of the glucose in the blood and then the cancer cells die from starvation. I have also learned that doctors are not educated about drugs in medical school and are often unaware of their side-effects, which stunned me when Lisa Ling revealed this on her program about Benzos on CNN. She was also stunned when she was verbally attacked by a doctor when she asked him why he prescribed them without understanding their side-effects. He said it wasn't up to the doctors to be informed about the medication's side-effects, that it was up to the patient! Unbelievable!!!!
I've come to the belief that there is a link between sugar and cancer. There is a campaign in the uk at the moment about 1 in 13 cancer cases are caused by alcohol, well most alcoholic drinks contain a high level of sugar. So I think that you may have something there.
Hi Julie. So sorry to hear that the afinitor and Evemestane is making you feel ill. I took the same combination and was ill from the beginning. I made it through 3 months and stopped the treatment. I took a few months off to recover from feeling so ill . All is well now. Take care hope it improves for you. Shelby
Hi Julie. I tried Afinitor 10mg/Exemestane 25mg and became ill within 48 hrs of first dose. Very heavy fatigue first, then nausea, vomiting and diahrrea. Really sick. Usual over the counter anti- diahrrea med did not work. Doc said keep taking the Afinitor combo. He prescribed paragoric but that only stopped the diahrrea for one day, then it was back. No mouth sores. But I developed Erythema Nodosum on my legs. Very painful, large, red lumps along my shins and thighs. I sent a photo to my onc and he said stop taking the Afinitor combo. It took over a month for the lumps to subside, a few still remain but are small. During the 14 days of hell, I also went from 126 lbs to 109. An awful experience.
After about 6 weeks, Onc put me back on Afinitor but at 5mg with Exemestane 25 and am doing okay. No major side effects and back to almost my normal weight.
My side effects are nowhere near as bad as yours but I think I have everyone on the list! I never imagined it was possible to have diahorrea and constipation at the same time! I've lost 7lbs in 3 weeks. At least that won't do me any harm - I'm looking forward to getting back into my jeans! 😊
I start my meds today. I am nervous. I can't believe how soon the side effects started. How is your quality of life on them? I want to be able to do things. Do the side effects last all day? Will be taking Zofran, diarrhea, mouthwash and a steroid. I have read about the rash too. I am beginning to think I don't want to take these drugs.
I had horrible side effects for the first month, but after changing brand this week i’m back to myself. The side effects went as quickly as they arrived. I still have eczema on my face which is sore and a bit of nausea but i’ve got my appetite back and I think that’s helping with the sea sickness!
Sorry, I'm so excited became I'm feeling better, I didn't answer your question properly.
There are ladies on this drug combination who have minimal side effects. I think we all experience side effects with new drugs and it doesn't mean that things won't improve over the next couple of days. Just because I've had a rough time doesn't mean you will. 😊
My Onc wants this to be the next line of treatment. Do you have any Mets to your lungs? I’m worry because I had an plural effusion and have scar tissue in 1/3 of my right lung. Im also having terrible allergies from the humid Florida weather.
I also hope you get a few years from this cocktail. xx
I was doing well on Ibrance 100mg, no side effects to speak of. It got rid of a spot on my liver, but the bone mets increased. So, Onc took me off of it. He put me back in the infusion suite on Eribulin for several months. The bone mets stopped "lighting up" on the PET SCAN, but the cancer went to one of my adrenal glands. So Onc then put me on the Afinitor. That is where I stand now. This cancer is smart. All we seem to do is chase it down.
Funny it got rid of your liver mets, because I got liver mets while on Ibrance. I then went to just Metformin and my onc was surprised as it looked like one of the liver mets was dying. I will go back for scans again in 2-3 weeks. Since at this point, I am only on Metformin, it will be interesting to see the results. I also had skin cancer on my stomach that totally went away after I was on the Metformin for a week. It had gotten worse while on Fluvestrant and Ibrance.
That's exactly what my oncologist told me, he said that they just don't know why different meds work with some people and not others, and they use best guess they trying different protocols.
Hi jaybird, my cancer also spread to my adrenal gland which now instead of being pyramid shape is rounded. I have adrenal insufficiency, meaning the adrenal gland is not producing enough hydrocortisone in my body to counteract stress. So now I take that drug to substitute for what my body does not produce. When I saw the endocrinologist, she said the test did not indicate that the adrenal insufficiency was caused by the cancer. But I I'm skeptical about that, it just does not add up to me. I just thought I'd ask if you have any problems with this or if they put you on any pills. It took them a while to find mine oh, I kept getting sick every time I walk up the stairs to my apartment then I would come in and sit down and after about a minute I would vomit. I just couldn't understand it oh, and they missed it on a bunch of scans.
Yes, I believe that I am effected by the adrenal gland MBC. However, besides MBC, I have had tons of other stressful things going on. I tear up without a warning...have a hard time making decisions, etc.
I just had an MRI and a week later a total body bone scan done because my orthopedist saw something cyst-like in my left humerus. Well, that scared me into a dark place. Turned out to be Red Marrow Reconversion.
Had to Google it.
Anyway, yes, I think the MBC in the adrenal gland definitely effects me daily. ..but of course so does the cancer drugs.
My onc had not prescribed anything yet, but I haven't complained to him about stress.
Will look into hydrocortisone.
I have no nausea or vomiting with the Xeloda. I hope that symptom you are experiencing when you climbed steps is not often or still happening.
Just started my second round of Xeloda/examestane this morning.
Thanks Birdnut, I am not really having any more problems since I started on the hydrocortisone except for fatigue. But I have also been on ibrance and faslodex besides the hydrocortisone. Any of those could be causing the fatigue. Glad you are doing okay with xeloda. I am going to the genomics clinic on January 2nd to be evaluated for mutations. So I may be on xeloda soon myself. Or if I'm eligible it could be piqray. Xeloda does not bother me from what I've read other people saying on this blog, but I am concerned about piqray as it sounds like it can cause diabetes. But I will take it one step at a time.
Haven't read all the answers so apologies if I repeat things others have said. I started Afinitor/ Exemastane in June after 9 cycle of Ibrance... The first week was dreadful then it eased off but it got worse again on 3rd cycle. Lost nearly 2 stones, felt like I had no energy , very down, mouth sores, painful joints.... Now as I started the COC combo at the moment I can't be sure how which one is responsible for what . At my hospital they stick with 5mg throughout as they say it works just as well and limit the side effects ( in particular around potential lung lining damage).... Having said that after 3 cycles My disease progressed and I have already ditched Afinitor/ Exemastane and moved on to Fulvestran so I might not be making a strong case on this!😉...I hope you will feel better soon... It is so hard when our BAU baseline starts to erode and it seems like our body is losing the resilience battle... So much of it is about getting the balance right between quality of life and remaining progression free... I am sadly loosing the progression free battle but as least I haven't got nearly as many as those dreadful side effects ( silver lining right!)
I think it works well when coupled with Ibrance but sadly I had to come off Ibrance in June when disease progressed and in England you can go back on it when you have stopped it... For me I think the oncologist is literally just going through the list of protocols until I get on a trial ... Well if a suitable one can be found
I loved the ibrance /fulvestrant (faslodex) combination. There seems to be good evidence that ibrance starts working again after a break. It feels so unfair that we aren't allowed it again when it's known to be effective.
Thank you for that information. I've just had the first month and I'm hoping that the side effects will calm down. And why didn't your oncologist switch you to fulvestrant when you still had access to ibrance??
I'm always one for a good silver lining 🙂
I wonder why they keep us on the drugs till the cancer becomes immune to them. I know nothing about medicine but changing the method of attack before the cancer has worked out how to defeat it so that method of attack can be gone back to seems to make more sense to me. I appreciate that this is probably just nonsense.
Hi Julie, I heard an oncologist speak at the living beyond breast cancer conference. The quote she gave us was when your horse is winning the race oh, you're not going to look over at someone else's horse and say that one looks good. Meaning if your medication is currently working, you don't switch to another one, unless your horse starts to lose the race so to speak.
Do you have diabetes in your DNA? If so, you might try adding Metformin to your regimen. Many people are borderline diabetics and don't realize it and current medical tests don't reveal it. Some researchers believe there is a connection between diabetes and cancer. If they are right, it makes sense that Metformin kills the cancer cells by starving them by getting rid of the glucose in the blood.
Julie I was on 10mg. I developed an allergic reaction to the Afinitor. My mouth started swelling. I mentioned to you I took a break from the drugs for a few months . I went on Ibrance and Stopped!!! Ibrance after the third pill I had another allergic reaction. I take a lot of pills so I won't feel sick I will send you the names tomorrow they sure do help. God bless🙏🏻 shelby
. But still on flasodex I really hope your next month will be better.
Thank you 😊 I have a body that is sensitive to all sorts of things so I understand your frustrations. I was ill on tamoxifen but the oncologist thought I was exaggerating. That’s why I was so ecstatic when I could live normally on ibrance and faslodex.
I too had to come off after bad reactions. Three months now without anything. My sciatica needed to heal/ pain was unbearable. The only time I went into any remission was after radiation nov 2017. For 3 months. Then faslodex, then ibrance which almost killed me with reactions before it was stopped. Then xeloda- another reaction. All the while scans were mixed.
Moving on to Herceptin- the premise in oncology is if it works use it till it doesn’t. The problem with mbc is if when and how it gets smart enough to resist the treatment and that is a big unknown for each of us.
This is my fourth year in. I want some good results from something without a reaction. I said I wouldn’t do chemo 4 years ago. Well, here we go. I am not ready for taxol; first we try Herceptin/perjeta and he wants to treat with piqray also because + for it. Ok- not ready for that either. I have become more open but still have reservations about how far I will go.
Right now is one step at a time. More than that I cannot do. I have to feel strong mentally, emotionally and physically/spiritually to begin the next war. That has to be first otherwise I am good for no one even myself.
Hi Julie. I take one ondansetron @ 8 mg every day. It really helps controls the nausea. Since this drug is expensive in Canada it's covered through your doctor . Hope this helps. Shelby
How much is it in Canada? I'm surprised it is expensive, because with my drug coverage, it is very reasonable here. It does help though when I am feeling sick, which I don't feel very often. Right now I am only on Metformin, which can make you feel nauseous at times.
I shall be, my first two months on ibrance, I woke up with a very red rashy face around a 18 or 19. My oncologist told me if it happened again on the 3rd cycle, we would probably switch to something else. But it did not happen the third cycle oh, she said sometimes the body can just get used to it and you can get past it which was the case with me. Of course this depends on the severity of the side effects, in my case I did not have any itching just redness and swelling. But I did cease taking the pill until after I had my week break after that.
I truly believe that we need a new mindset in developing drugs to fight cancer. Many patients are not strong enough to endure being poisoned. There are kinder, more natural components that can kill the cancer, but not our healthy cells, not our taste buds, which we need to sustain our appetite to help fight the cancer.
I still feel very strongly that they need to do better developing kinder more natural killers of cancer cells that leave our other cells alone and healthy. I think that most researchers, doctors, etc., are men and one of the common traits of men is that they think of everything in terms of a war, which cancer is, but men with their testosterone tend to possess an "overkill" mentality. How can we eat if our taste cells have been destroyed, if we have mouth sores, sores in our throats, vomiting, have constipation, or the runs, or have unbearable pain from nerves and other damaged cells, membranes that have been severely damaged by the poison they call "chemo."
I agree that we need to find a kinder way of treating cancer, but when you look back 30 years we have come a long way. When my aunt was treated for stomach cancer in the early 80's her surgery was brutal and when she had chemo she had nearly a week in hospital under sedation because of the terrible side effects.
Our treatment isn't kind, and until they develop a way where the body can identify cancer cells and kill them itself it's not going to get much better. I don't think that will happen in my life time but hopefully it will be there for my children.
Your aunt, sadly, suffered greatly, as many others continue to do today, forty years later. There is room for much improvement and the drug companies see no need to improve things, as things are very profitable for them the way things are. Why would they want to change? It doesn't help that doctors receive little education in medical school about drugs and are often "in the dark," about their horrible side-effects. I have been brain damaged by the Exemestane, and my sense of balance has been badly damaged, causing me to sometimes stagger when getting up and walking, as if I have been drinking. I can't even blame Pfizer, as they actually have posted this on their website as a possible side-effect and to tell your doctor immediately if you have vision or balance problems. I did this over and over again to no avail to my two oncologists. They didn't have a clue that this was posted about this drug. Then while watching Lisa Ling on CNN talk about Benzos and how doctors are over-prescribing them, making them the new Opiod crisis, she asked a doctor why he over-prescribed it, causing one of his patients to commit suicide, which is a common side-effect. His response was one of anger when he replied that it's not the doctors' responsibility to know, the side-effects, it is the patient's. Lisa was flabbergasted and replied that can't be true! She interviewed a psychiatrist who confirmed what he said, saying that it's not bad doctors, it is bad-doctoring, as they receive very little education about drugs in medical school. I have found out through my own experiences that this is true. I don't even trust their drug protocols for the cancer, not only because of this, but because they lack empathy. I am small and have lost a lot of weight, one reason being that my taste buds have been very slow in recovering. My oncologist told me that I would just have to get over it. When everything taste like cardboard, it's very difficult to get over it.
It's interesting that you say the doctor claims that they are not responsible for knowing side effects. I have read and heard in many places that that's one of the main questions you should ask the doctor when he prescribes a new medication, what are the side effects. And in fact I have always done that. That being said, I always feel it's very important to being an informed patient. Whenever I have to take a new Med, I always look up as much as I can on the Internet or ask around about it, this blog is very helpful for that. It's like the doctor has his part to do and we have our part. But I think it is crazy that a doctor would not know the side effects of a drug he is prescribing.
We all have days like this. Sometimes when I am awful bad because of the meds, I think is it worth it if I can't enjoy a quality of life and also have thoughts of saying the heck with this and wanting to be off meds and just feel normal again. But then the bad day or days will pass and I don't think that way again.
Everything got on top of me on Friday, feeling a bit more like myself today. It’s hard because I did have quality of life and treatment, and i’m determined to have both again, after all the great advice I need to talk to my oncologist about reducing the dose 🙂
Thank you Sandra, some days it’s just harder than others isn’t it. I want quality of life now. Might change my mind later but having seen my uncles and aunts go through this I don’t think I will.
I will give it a little longer to see if my body settles, i’m Supposed to be seeing the oncologist in 2 weeks time if they remember to send me an appt so will discuss it with who ever I see then.
Julie, I've been on this combo for 18 months. Did get one break because of a very rare side effect. On full dose if both and it's been the easiest for me yet. I did just get the afinitor in 5 mg. I was on 10 over a year
Julie, I have been very fortunate and thank God. Honestly, I don't even know I'm on this cancer medication. Other than a few sores on my head I feel absolutely normal.
I just posted that I am starting the same protocol. Worried about the side effects. Are you still taking and having side effects. Do you think it's worth it? If this doesn't work I go back to infusion chemo.
If you'd asked me this time last week I would have said definitively not. I'd decided to ask to come off it and take the Taxol.
But on Monday I changed brand of the exemestane- Tuesday morning when I woke up I was almost back to normal ! All the pain has gone, so has the tiredness, depression, and my energy and appetite is back! I still feel a little sick but even that is subsiding. I'm just on my way out but I'm going to share this information in a post when I get back. I would now say, give it a try and ask for a different brand if you get the awful side effects!
I'm having a hard time processing the thought that if you switch brands of a drug, the side effects May lesson or worsen. It seems that the drug should be a drug and it shouldn't make any difference, this is disturbing to me. I'm glad you brought that up because I will ask my oncologist about that the next time I have a problem with a drug.
Hi, so sorry I didn’t make a note of the brands and I can’t remember. I had the same thing happen when I was on tamoxifen. Some brands gave me awful side effects.
I spoke to a friend who was a medical rep for one of the big drug companies about the different side effects of taking same drug but different brands. He explained that the amount of active ingredient in a drug can change and this is legal as the law allows tolerances. It can also be how long a drug company has its drugs in store before distributing them as active ingredients can ‘fade’, or it can be the fillers used to bulk out the active ingredients.
If you are having bad side effects it’s always worth seeing if you can change the brand.
Thank you. Meds arriving tomorrow. It looks lile this is going to be worse than my chemo when I was first diagnosed 4 1/2 years ago. Not looking forward to this. But what are ya going to do. Going to live the rest of my life having as much fun as I can.🎃😊
Do you know what dose of afinitor you are being started on? A lot of advice here is that a lower dose is easier.
But as I've already said just changing the brand of the exemestane has made a huge difference for me. After the last 4 weeks I was seriously contemplating saying yes to the taxol, which I really don't want, but if I stay like this I know I can get on with life as I want to live it 😊
I have severe dizziness and balance problems thanks to the Exemestane. It is not getting better and I am terrified! I am also upset as I have two oncologists and neither were aware that this was a side-effect. Lisa Ling did a special on Benzos and her report revealed that doctors are not aware of the severe side-effects of most drugs as they are not educated in medical school about drugs. One doctor said it is up to the patient to know, that they don't have the time. Talk about a wake-up call! BEWARE!
Julie, be very careful with the Exemestane. I have severe brain damage from it that has robbed me of my independence. It has affected my vision, I have dizziness unless I am lying back or down and my sense of balance has gone. My ability to walk is all but gone. I do it on a limited basis because I can fall so easily and have! This drug shouldn't be on the market! It has ruined my life while i am in the midst of fighting for it!
Thank you for the warning. These drugs are so strong. I only stayed on exemestane for 3 months with it suspended for 3 weeks during that time. It made me feel very ill, though changing brand did help. I lost nearly 2 stone (28lbs) while on it, but my side effects weren’t nearly as bad as yours. It didn’t work for me as I had further progression whilst on it so it was probably stopped in time.
I had terrible side effects from that combination. Could not make 4 weeks. Mouth sore weight loss no appetite, nails fell off, breathing problems then something on lung. Doctors in hospital had me sign consent to do a report on it.
I had mouth sores and bleeding lips, lung damage, no appetite and weight loss and then it didn’t work! Kept my nails though 😊 although I don’t think it was really given enough time to work, but it didn’t suit me, I wasn’t sorry to leave it behind 😊
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Exemastane and Afinitor 
