Hello all of you gorgeous women.
I'm wondering if anyone can tell me the signs they had , beside blood markers and scans, that have suggested or infact told them that the concoction of Ibrance/Letrozole has stopped working.
I am getting hives all over my body every month around 2.5 weeks into my ibrance schedule. I know that every little thing that happens becomes a cancer/Medication query for us now that we have this disease. But also, I am just interested.
Thank you.
Timtam56
I doubt you would have a rash from it no longer being effective. The only way to know is through a PET scan and seeing progression and metabolic activity.
Ok things a rash could be from...
Allergic reaction and not necessarily from meds could be environmental, food, pets, winter and i say this because im currently waiting results but possibly an auto immune disease.
Best to talk to your doctor and also biopsy an area where the rash is active
Unfortunately Ibrance is no longer working for me. Due to have a scan within the next few days and see where I go from here. Been going through some dark days feeling I'm running out of options. Pain is increasing too. Let me know what suggestions they offer, I'll be interested in knowing how things go for you. Good luck, friend.
Flatrock. That is hard for you, I’m sure. What are the symptoms that ibrance is not working, besides more pain and your test providing you with proof. Did anything happen that made you aware that ibrance is not working?
I hope that they will put you on the next line of medication that quite a few here are on and that it works for you.
Please keep us informed as to how you are? And please don’t lose hope. My oncologist said there are still other things if and when ibrance stops working. Take care and good luck.
Timtam56
Thank you for your encouragement.It helps to know I'm not the only one where Ibrance is no longer effective. All of us experience set backs on our path to healing. Love your support!
I’ve heard from my Onc there may come a time when Ibrance is no longer effective. This is quite typical so please try not to worry. She also said there are many alternatives should that happen. I’ve been on it and Letrozole for 2 years with little side effects other than low neutrophils and an occasional rash.
Wishing you all the best with your treatment and the holiday season. Kathleen
Hi there. Many of us have gone thru this same thing - Ibrance stops being effective. Ouch. It shocks to hear this as it is usually the first treatment we are on that stops working and of course we are scared. The good news is there are other treatments to go on and more continue to be researched each day. I am on my third treatment now, also an oral pill and so far it has given me the best results. So keep the faith, stay positive, you have options!
Thank you for sending your good thoughts. When I learned it was not working I quickly became depressed for the first time since my diagnosis. Im trying to work out of it now, taking one step at at time. Good to have support from friends like you on this site.
Totally normal to feel depressed when you hear meds stopped working-especially when it is the first time because it is scary not knowing what is next! Your doctor will have a plan for you! Faith
I WAS ON IBRANCE, IT WAS NOT WORKING FOR ME. I STARTED FENBENDAZOLE-PANACUR C(AMAZON) IT IS WORKING VERY WELL-PET SHOWS TUMORS HAVE SHRUNK BY 50%!!! NO SIDE EFFECTS!! START WITH 1 GM/DAY X 5 DAYS. CDUTTON@COX.NET
I’m seeing 2 years later. Can u tell me more. 1 gram every day
You can find out more here ncbi.nlm.nih.gov/pmc/articl...
You should think very carefully before taking an animal medication that’s not been trialled for human cancer outside a Petri dish.
Some don't lose their hair on Ibrance, my sister did. We knew it had stopped working because her hair was growing back....Prayers for you....
Thanks all. And Sandra. I agree. But there was the thought that at about halfway though our cycle our white bloods are getting lower. That was my only thought about a relationship to the cycle and the hives. Anyway. I went to the doctor (GP) yesterday. She was great. I’d drawn a map of body and spots, and put all the dates of the flare ups. She got a blood test done. Rang my cancer hospital for me and got back to me. She wants me to take an antihistamine everyday, and go back there next week for her to see what’s happened.
All will be revealed. She actually said they could be a bite or something that my body is reacting to. But yes. Drinking more water could never hurt me. I’m a bit naughty with that.
Will do.
Hi Timtam56,
I have not had many skin problems. Just a tiny rash in a couple of spots that healed quickly. So I don't know if your hives are related to the drugs you are on. Food can also cause hives. You might be allergic to something. You are going to have to try to examine your diet carefully and see if you started adding something new to your diet around the same time. From what I remember you are on Ibrance and Letrozole. Is that right. How long have you been on that combination. For me it has been a year at the end of May. I am doing quite well on it but sometimes I catch a strange little cold and cough for a few days and then I get over it. It is a bit of a mystery. The Oncologist I see monthly said it could be pollen etc. but this started before plants were blooming so don't know what it is. It doesn't interfere too much in my life so I put up with it.
I want to thank you for telling me about the Vitamin C called Liposomal. I found it at my health food store and have started taking it. It is a bit pricey but I don't have too many other bad habits so it is worth spending the extra money. I take the one tsp. a day which is recommended on the bottle but maybe I should be taking much more. Do you follow the instructions on the bottle or do you take a really high dose. I am also taking a few of my regular C tablets. And lately, because I live in the country, I am eating dandelion greens which grow abundantly on our acreage. I wash them thoroughly and just chew them up and swallow them. I don't make them into a salad. But I suppose that is also an option. I keep searching for things that helps. I just bought the book "Eat to Beat Disease" by Dr. William Li. I haven't read it yet.
Stay well and thank you again for putting me on to Liposomal C.
Hugs Marlene
Hello, New here but I did want to comment on Ibrance and cough. Do you get winded more while exerting yourself? Do you find that you’ve started to wheeze a little?
Well after a year of severe breathing issues, pulmonology appointments, and diagnostics, turns out Ibrance can cause bronchial inflammation. I wished I had known. I have to take Montelukast forever now so I can breathe properly (plus an albuterol and a steroid inhaler as needed.)
My point is only to make sure the cough doesn’t turn out to be the Ibrance side effect. Many blessings.
Thank you Marlene. This post was from six months ago. I think it may have been something in my garden. Then causing a reaction perhaps.
Glad to hear your are going well on your Liposomal. Keep up the good work.
I am awfully weak and my markers have gone up.
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