Faslodex Girls Thread
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off to get my two shots in the behind this morning. Not looking forward to it.
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Thanks for your answers girls. I didn't try anything new in terms of food , meds or anything and have no other symptoms of an allergic reaction.
Dianarose - quite interesting about hydration and tongue swelling. I sure don't hydrate enough, I have to get up to speed on that. Good luck this morning!
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Had a great visit at the cancer center today 😎 My platelets went up to 198 and tumor marker came down 20 more points to 120. MO is really pleased and so am I. She lowered the Ibrance to the 100's but they won't get here until tomorrow so she said to take one of the 125's I have leftover today to get started. Still have a bad headache today though. On the way home we stopped at Shaw's grocery store and they have this monopoly game promotion and I won a 100.00 gift card so it's been a good day.
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Got my Faslodex and Xgeva shots today. Then met with onc, she figured that I am due for a blood test and scan so the scan will be planned soon. Almost no change in my physical and mental condition. So I got six months Faslodex and Xegeva extension. That will push me over 3 1/2years on Fas.
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Good going, cling. Here's to many more years on Faslodex. Bottoms up!
Tina
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Wow, Cling, That is good news. I love hearing that people stay on treatments for a long time. I hope you stay on Faslodex for many more years. Let us know how the scans go.
Dianarose, I hope you get some relief from that headache. Do you know what it's from? Woohoo for your platelets count and tumor markers. I am having good results on 100 mg dose of Ibrance, so don't worry about the lower dose. All my counts tanked big time during cycle one, and I have been on the lower dose ever since. Yesterday was definitely a good day for you - good news from your onc and $100 gift card from Shaws!
I also had an appointment with MO this week. My tumor markers, CA27.29, are down to 133. That is the lowest they have ever been. They were over 900 when I was diagnosed almost two years ago. I had my Faslodex shots and Zometa infusions with no SEs. I am coming off Ibrance for a few weeks so my blood counts can come up before my kidney surgery next month. I am doing so well on the Fas/Ibr combo that I hate to take the long break from Ibrance, but my MO and urologist agree this is the best course to take. I am very lucky because I feel pretty darn good.
It's a cool, rainy Friday here. The weather shifts have been crazy. Enjoy your weekend.
Lynne
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Lynne- so awesome that your tumor marker has come down so much. If you don't mind me asking what kind of kidney surgery. I have had a naphostomy tube since last August. I hate it. Cold and rainy here too. Waiting for FedEx to bring my Ibrance.
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Well I am officially a faslodex girl. I got my first two shots yesterday. It wasnt terrible. The left side is bruised and a big lump. I have a headache and I am tired but thats ok. Hope everyone is doing wel
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Dianarose, I have a partial blockage in my kidney where the ureter meets the renal pelvis. Since I have only one functioning kidney, my urologist feels that I should have pyeloplasty to repair it because the blockage has gotten worse, and I am at risk of eventual kidney failure. I have had an internal stent for the past two months and will have to have a new one for six weeks after surgery. The alternative to the surgery is to have the stent replaced every four months for the rest of my life. Since that requires general anesthesia in a hospital setting each time the stent is replaced, I opted for surgery. I hope to live a long time, and I don't want that surgical suite to become a place I visit that often! The urologist did consult with my MO to make sure this is a reasonable option for me. Do you know how long you will have the naphostomy tube? You have had it quite a long time. I find my stent to be a nuisance at times, but I am sure your tube is much, much worse. You are amazing. Why did you have the tube placed? Infections? Stones? Blockage? You don't have to answer, of course. I am sorry that you have to go through all this on top of cancer.
Hugs from, Lynne
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Lynne- June I woke up with terrible flank pain and was treated for an infection. I still had pain after the medication was gone. July fourth I was thrown from my horse and ended up in the ER with a broken back. The CT scan revealed my right kidney was not draining. Made an appointment with a urologist and had to wait as usual. Finally got in an scan revealed either an enlarged node or cancer was crushing the urerter. Went through having the stent put in. It hurt every time I walked. After three days it stopped working. I was in so much pain I begged my husband many times to just take me out of my misery. They made me wait six days like that before they put the tube in. I have to go every six weeks to have it changed out. They give me several shots in my back each time that hurt like hell. I always have a chronic infection. I now take antibiotics 3 days a week to try to keep it under control. Sometimes the tube comes disconnected when I am sleeping and wake up soaked. I can't go swimming or even wear shorts. It totally sucks never mind the lack of sex appeal with a bag and tube strapped to my leg. I am praying Ibrance kills whatever I say causing the issue. When's I go next month to have the tube changed they will put dye in to see if it drains. I amnot going to get my hopes up though. Is your blockage from the cancer
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Dianarose. I am so sorry for your pain. Sending gentle hugs and prayers.
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Holy cow, Dianarose, You have been put through the ringer. You are handling it better than I would. My blockage is not cancer-related. The fact that my left kidney did not function at all was discovered when I had my first CT scan at MBC diagnosis. I was referred to a urologist who did testing and found that ureter is blind-ending and could not put a wire or dye through it. She ordered a urology CT scan a few months later and it learned that the kidney has been replaced by cystic-like tissue and could have been that was since before I was born. End of story for left side since I do not have a functioning kidney there. She also learned with that scan that I had rather suddenly developed a large kidney stone in my right kidney. She did surgery to zap that stone with a laser, and during that procedure, she noticed a kink or pinch in the right ureter. She has been following that issue with MAG-3 scans to see if there was slowed drainage of right kidney caused by the pinched ureter. The drainage time doubled in six months, and passed into the danger zone ( my term). She and her colleague agreed that it was time to act since I need that kidney to do its job since it is the only kidney I have. The blockage could be from several things including what they called crossing vessels. They will fix whatever needs to be fixed. Wow, sorry for that long explanation.
Now, back to the important subject, you. I find it troubling that you have been going through so much pain and stress for so long. It is terrible that you had to delays in treatment when you were obviously in serious need. Have you considered getting second opinion? I don't know how it is near you, but urology practices are in short supply and high demand near me. My DH had a very complex kidney cancer last year, and he went to Brigham and Women's Hospital because doctors there were better qualified to handle his surgery than the dr's here. His urologist there is also associated with Dana Farber. I mention my DH only because if you could go to a urologist associated with a big teaching hospital, he or she might be better equipped to handle everything that is going on with your kidney and might be able to offer suggestions for resolving things. They might have more specific testing equipment and resources. Anytime you have a tube exiting your body, it invites infection. The fact that the tube sometimes becomes dislodged, just increases that risk. Does your urologist think that the issue will resolve itself or is further intervention required? Are they still not sure what is crushing the ureter? If not, are they planning to find out so they can determine if the situation can be improved?
I am sorry for all the questions, but you deserve relief, and soon.
Hugs, Lynne
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Lynne- I went to three different urologist, one in Boston and I had too much cancer in my abdomen to do anything. They all agreed it was too risky so the tube is what I got. Ibrance and Faslodex are my great white hope. My MO isn't real big on scans as she said my blood work tells the story. I am sure at some point I will have them. Lobular is hard to see even on the scans. Some days I get really freaked out that I won't be free of the bag until I die. I already told my husband when that time comes to make sure they take it out. On a positive note we are all still here. I had a great day with my two granddaughters. I will admit I am tired now but it was a great day
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Dianarose, You certainly have done everything you can. I will continue to pray that Faslodex and Ibrance are the answer for you and that you see results and relief soon. Needless to say, I hate this disease and what it does to us. My MO isn't big on scans either, and I am okay with that. I don't think that my urologist will do more CT scans, but she did say that they would do follow-up MAG3 scans after surgery. You are right, we are all still here. I have a habit of looking at my DH every now and then and saying, "Well, I am not going to die today." Luckily his sense of humor is a weird as mine and we just laugh.I am glad that you spent time with your granddaughters today. I have to admit that seeing my grandchildren always makes me feel good.
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Lynne- what is a MAG3 scan
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Dianarose, A MAG3 scan is a renal scan that shows the function and shape of the kidneys and traces the flow of urine from the kidneys, through the ureters, and into the bladder. It is a nuclear scan. A nuclear tracer is injected through an IV, it is actually that tracer that shows on the scan. Lasix is also injected during the scan. The test allows the radiologist and physician to identify any malformations, blockages, renal vein/artery problems in the urinary system. The test takes about an hour. The report from the scanincludes a graph that show how each kidney drains. Mine shows a flat red line at the bottom for my left kidney. The report also gives other information such as time for draining and % of flow per kidney. It also says whether or not an obstruction is suspected based on the results. It cannot, however, say what is causing the obstruction.
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Lynne- they know whatever is causing mine is on the outside. I know when they change the tube they put dye directly in that kidney and watch on some piece of equipment. I can't see as I am laying on my stomach. I will ask when they do it next month. Once I am strong enough and get more of this dam cancer under control I am going to search for an alternative to this tube.
This weather is awful. Just want to be outside but it's only 34 here today 😖
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Dianarose, it sounds like your dr is doing a good job of monitoring the blockage. I do hope your cancer is under control soon, and they can remove that tube. Judging from the dramatic drop in tumor markers, I think you are headed in the right direction. The weather is miserable here today, too, although it is toasty compared to your area. My DH and I went to our grandson's baseball game this morning. It was 41 degrees, drizzly, and breezy. I wore a shirt, a sweatshirt, a jacket, and was covered with a blanket, and I was still cold. They call this spring
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Lynne- just trying to think about all this stuff can make a girl go crazy. Although I am excited about my tumor marker going down am I correct in saying that it doesn't necessarily mean less cancer but could be just that it's not dividing. I so hate to get my hopes up anymore just to be knocked down again. Does Ibrance actually kill the cancer?
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Dianarose. Ibrance together with Faslodex slow down and/or stop the cell division and growth of cancer cells. They have also been shown to shrink tumors. From a personal experience, I can tell you that since starting this combo, the tumor in my breast has been reduced so much that it can no longer be felt upon examination. My three liver mets also got smaller and were much less visible on my scan in December. My bone mets were found to be stable at that time. I know that I will always have some cancer cells in my body, but for now at least,my cancer is less active and seems to be retreating. My tumor markers are going down as my tumors shrink. I choose to remain optimistic until given a reason to believe otherwise.
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Lynne- I too am optimistic but given my situation I need to be somewhat realistic too. I read something somewhere that stuck in my head. It said don't do the miracle but be the miracle. That's something I would love to achieve 👍. I never had any large tumors to monitor if they are shrinking. Lobular is weird like that. I do have 4 tumors in my vaginal area. Three are smaller and one has remained the same. Another blow to my love life. I just keep praying that Ibrance continues to work for all of us and that they find even better treatments. Sixties tomorrow so enjoy the sunshine ☀️
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Hello - I was on Faslodex for about two years. Has anyone ever thought the injections were not given correctly and therefor not effective? Basically, I have a large bottom ... and I do mean large.... and the fat pocket in my opinion is where most of the shots ended up, not into the muscle. The first nurse in infusion did it right but she left at six months in. Then the problems began, feeling like I had H1N1 for a few days sometimes, terrible coughing, fever, pain, headache, exhaustion, and one time during injection I could smell and taste the medicine and coughed convulsively for an hours and had a high fever that evening and major chills for hours then it just stopped. It was never like that before. Maybe the build up accumulated into SEs like this.
Also injections were interrupted about two years in due to a head on collision and broken bones. Then due to me being increasingly more ill, spaced to five weeks. But the problem was by then mets had started and the doctor reporting results of the PET CT was not all conclusive. Faslodex was blamed for the horrible cough, weakness and more. I went off it. Mets were the problem though. Editing to add that during the time of mets my labs were perfect, except a slight elevation slowly in RDW.
I am asking this because I am considering going on Faslodex either with Xeloda or after Xeloda.
So does anyone think they just did not get the injections quite right and that may be why it did not work or stopped?
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Bluebird, somewhere within this thread there was an excellent description from a nursing publication re. how intramuscular shots need to be done, including either pushing and/or pulling the flesh to get as close to the muscle as possible. There are so many ways this procedure can go wrong though. I once had a tech eliminate the air bubbles in the needle before warming them, which made moving the liquid around to warm it impossible. Another common "error" is injecting too deep, which can be very painful going in. The following article isn't the one that was posted here, but does give some guidelines that may help you figure out what went wrong with yours, but from your description, it certainly sounds like they may have missed the muscle partly or entirely.
http://www.healthline.com/health/intramuscular-inj...
As far as doing Faslodex and Xeloda together, I don't believe it's an approved combo, so not sure how your onc would get it approved even if you wanted to do it. But having recently finished 19 mos. of Faslodex (with Ibrance), and now on Xeloda, I can't imagine doing them together.
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Bluebird- I have had my three rounds of loading doses and each time I get really bad chills after. I even wake up from the chills. Tomorrow will be a week since the last one and my behind still hurts.
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Has anyone experienced swollen ankles while on Faslodex and Ibrance?? Both ankles are really swollen
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Bluebird and Dlb,
I was the one who posted the article on large-volume IM injections a while ago. Here is a link to it:
http://www.oncologynurseadvisor.com/chemotherapy/l...
Tina
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Thanks, Tina. That article really needs to get pinned to the top of this thread. No idea how to do that, but maybe someone else does.
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Agree, Deanna! I don't know how it's done either.
Yoo-hoo, mods or techies?
Tina
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Well, my celebration for moving to 3 1/2 years on Faslodex is premature. The scan post last week doctor visit did show something in abdomen. So now goes for a biopsy next week. I may have to leave fanny pack after 3 years.
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My low bad has hurt really bad since my two shots last week. The PA at the cancer center said maybe the nurse hit a nerve. Feels like she hit a bone 🤕. On a positive note my platelets were 316 today. Best they have ever been
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