My health has gone down dramatically in the past few weeks. The oncologist really wanted me to do beginning doses of Faslodex with or without Truqap ,yesterday. I have been asking for Truqap alone, for months now. My niece and husband took me in a wheelchair. The onc saw the reinforcements and folded to my wishes.
So far, I don't feel any differently. I am hoping that the three more daily does will not change the state of play. Then, beginning next Monday, the Truqap will be given with the start up doses of Faslodex. I am hopeful that things may turn around. I appreciate all of you/us. We are a force that informs us, supports us and gives us a soft and a loving landing. God bless each and every one of you. If this offends you as an agnostic or atheist, then I am sending you very sincerely healing energies. It's all good! XXX OOO
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jersey-jazz
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Dear Jersey,Prayers this works for you. I have not been on either. So far it's been Ibrance/Letrozole for me. Cancer is scary. I am lifting you up in prayers. God bless and best wishes. Hannah
Hi Darlin' I am on both @ MSK but don't have a scan until March so I don't know if they are working. I do feel great though. A little diarrhea that's it... but other side effects can be silent like glucose and liver enzymes etc. Why did your onc not want you on Truqap? So glad you are getting the treatment you want. God bless and positive science x
I will very inappropriately answer for Ms. Jazz. Based on her previous posts, I think her onc wanted her on fulvestrant, with or without Truqap, and she wanted Truqap alone. Standard is to give Truqap with fulvestrant. It sounds as though she is getting both: briefly on Truqap alone, then she will add fulvestrant soon. The onc. was wary about Truqap because of JJ's liver, but she prevailed.
Hi Tammy I was told I have liver mets n the new meds I haven’t started yet till after my appointment…. This Thursday 2/6….Is Truqap not good for patients with liver Mets.???
No idea. I was just clarifying what Jersey Jazz was saying, or rather her oncologist was saying. If you look further back in her posts, JJ had had Truqap for a while, but her oncologist was doing no treatment because of her liver being in bad shape. Just about anything we take is hard on our livers and kidneys because they have to clean out toxins. JJ wanted treatment. The treatment her onc was Truqapp and Fulvestrant. (They are supposed to be given together.) Took a long time for JJ to persuade the oncologist to let her go ahead with Truqapp.
As far as I know, Truqap is recommended based on type of mbc (ER+, HER2-) and particular mutations, not the location.
Glad it is okay with you. It is an embarrassing trait, being a know-it-all. I have a problem with correcting people's grammar. It is wrong, but I can't help myself.
I am feeling a little better, today, for the first time since the beginning of the Truqap. So, I will allow the Faslodex to enter my body again, for the umpteenth time, next Monday.
It is a favourite song of mine and I had just been listening to it before I came upon Health Unlocked. I had just been diagnosed with mbc and am not really sure why I used that. I think a God moment💕. I find so much support on here. Thanks for asking.
It is a favourite song of mine and I had just been listening to it before I came upon Health Unlocked. I had just been diagnosed with mbc and am not really sure why I used it. I think it was a God moment 💕. I find so much support on here. Thanks for asking. Theresa
I am so very sorry you are going through all of this. I hope your treatments will work for you and not cause side effects. This disease is definitely a journey and it takes a village of hugs, positive thoughts and prayers to help us as we navigate this journey. Stay strong. Hugs and prayers.
Hi Jersey-jazz, perhaps I'm wrong but I felt like we had been on a similar run of drugs. It's disturbing when our health deteriorates quickly, I had that at the start of last year and, not so bad fortunately, but around September too. I do hope this new regiman works well for you and you can get back on your feet again.
I'm unsure why you didn't want to have the Faslodex? Either way, sending you love and healing thoughts!
As my good friend TammyCross notes above, I really wanted to try Truqap alone but I will be restarting the Faslodex on Monday. My oncologist said that I was to begin the start up doses with Faslodex as of Monday morning. On Monday afternoon, I brought my reinforcements of large niece and a very tall nephew to the meeting and we sat in a row. She then and there agreed to let me have the Truqap, alone, for one week. So, this week was the Truqap alone. Besides have absolutely no energy at all, there were no side effects that I know of. On this coming Monday I have to begin the start up doses of Faslodex while carrying on with half doses of Truqap. I've lost more pounds, one at a time and I am down to eighty five and happy to be on a targeted therapy, finally.
Oh my goodness, I hope you can get your weight back up soon and, most importantly, have success with these drugs! The waiting in between these treatment changes is never fun at all so I understand your relief to have started again. Best wishes
Truqap is a targeted therapy. Often a targeted therapy is added to fulvestrant to extend the effectiveness. Other targeted therapies that might be added to fulvestrant are Ibrance, Verzenio, and Kisqali. Truqap would be chosen over those if you have a particular mutation. The targeted therapies are not used alone; they are used to enhance the estrogen inhibitors.
best wishes that you enjoy some help and improvement with the drugs. While the drugs work their magic, the important part of your improvement comes from your mental well being. Must be a relief to have the meds and see how they work. May the journey be long!
My mental wellbeing is better while I am taking something towards an improvement instead of hanging around waiting to die. A visiting nurse asked me if I wanted to on to hospice and I told her "negative", that I am going to be around till I am ninety. She raised her eyebrows at me, the bitch! Thank you for your good wishes!
Hello Jersey jazz I also live in Jersey … i just had a PET scan and findings were metastasis to my liver …I was told to stop my Ibrance n Exemestane which I have been taking for 3 years. N in March I had a PET scan and told I was in remission and everything has been good the cancer dormant n not spreading. Now this new pET scan showed liver Mets. My onc put me on truqap 4 a day (2 in am 2 in pm) plus shots of faslodex. My first appointment is this Thursday n I already have a page of questions. The specialty pharmacy called me to discuss the Truqap n side effects. N I was on line looking up the shots. Not very pleasant . I am a highly anxious person so my anxiety has skyrocketed n I am not sleeping since getting this news. I read up on the meds n I already have high cholesterol n I read they have to watch my triglycerides and my sugar. I been doing well finally got the diarrhea under control ….now a whole lists of new side effects. I am never gonna be able to leave the house. I am trying not to be fearful of what is coming. As always thinking of you all
Faslodex/fulvestrant is one of my favorites of the many meds I have had for mbc. If the injections are given correctly, they are not that bad, and it is a few moments, then over and you don't have to do it again for a month. I would take that any day.
Do a search for fulvestrant injections and you will find much good advice to make them easier.
Don't know about Truqap, but we are all different in our responses. I always get the unusual side effects, not the main ones. Meds I find have almost no side effects knock other people out, and vice versa.
Well, it is hard to keep adjusting. I have also been in remission (although my oncologist would never use that term), then boom. And also promising treatments not helping. But the best is when you are terrified of a treatment based on someone else's experience, and then you are fine.
Dear Nocillo ---Yes, I have done Faslodex before. Other than getting very dizzy from the shots and a little sore, I really tolerate Faslodex well enough. Thank you for your good luck wishes. I need all the help I can get.
Okay, here is the cumulative advice on those injections. 1) Make sure the nurse injects more toward the hip, not the buttock. Hurts less and less risk of hitting sciatic nerve. 2) Make sure the fulvestrant is warm. It goes in much more easily. Easier for the nurse, too. People here suggested warming it by putting the hypos in your arm pits or between your thighs. 3) Some people say massaging after helps, and heating pad helps. (Some people have seat warmers in their cars, I learned. I have to walk back from the hospital, and I think that helps, too.)
I brought a pillow for car ride. It’s a long ride for us. We have heated seats. I have been rubbing the both areas no issues there. But the Truqap is horrible. I think they overdozed me … going from 75 mg of ibrance to 800 mg of truqap. So so sick belly pain headaches vomiting diarrhea.
That's horrible. It is a good argument for starting at lowest dose and going up from there if tolerated. I looked up Truqap on this forum, and one of us had an oncologist who did that. The lowest dose is 200 twice a day for 4 days, followed by 3 days off, and the next is 320. Standard practice is to go to the next highest (320), then down if that is intolerable. Too bad you couldn't start at 200 and go up.
when I was first diagnosed I found this site. You have all given me hope. I pray for you all. Haven’t been on lately cause we moved and at 69 it takes longer to get new house together.
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Praise be to GOD!
Taking Ibrance and Faslodex 
