Faslodex Girls Thread
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Julie,
Congrats!. So happy to hear such good news. May it continue for many many years to come.
Highhopes
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Good thread as I'm doing the faslodex, two injections, but didn't notice the nurse warming up the needles. I had the third one today, double injection. I'm hoping no side effects, but also I've the Perjeta/Herceptin cocktail so not sure what is doing what. Today one of the nurses said I had full beautiful hair. She did notice my skin look dryer. It is probably do to the anti-hormonal shots. I hate the idea of thinning hair, or dry skin. I'm wondering after my radiation if chea seeds will help. It helps hair to grow, and thicken. Just don't want to make the cancer grow.
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I miss my taste buds, too! I bought a big package of pistachio nots, and they have no taste whatsoever! I am just now making the connection, why I have lost my appetite and so picky about what I eat. I have never had that problem.
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I just had my 7th set of double Faslodex injections last Monday. I have not noticed any disruption in my sense of Taste but I have had a reduced appetite. I have lost about 15 lbs since end of March which is not a bad thing for me, but not sure if it is the Faslodex or possibly the study drug I am taking in the PALOMA 3 clinical trial. I also am noticing my hair is thinning at a more accelerated rate. Anyone else having problems with their hair?
I have had straight, baby fine hair my whole life but at least had enough hair that it could be permed and styled. Now after losing it completely twice to chemo and then being on Aromasin for 8 years it has struggled to regain what it was before treatment. I still have to pencil in my eyebrows which only came halfway back after chemo 8+ years ago. Since starting on Faslodex and the clinical trial, there has definitely been an increase in thinning. If this keeps up I may have to start wearing hats, or get really good at doing a "comb over"!
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I am fascinated by all these reports of changing tastebuds, all happening at the same time. As someone who has been involved on this thread and its predecessor for over 4 years, this is the first appearance of this side effect during that time. I wonder if the drug has been modified in some way recently, or there is an interaction with another drug that all of you are taking and I am not.
I haven't lost a pound, and certainly haven't lost my ability to taste food. I do find that I crave salt for the three days following my injections and drink a ton of water. As we all have said one time or the other, as long as it works!
*susan*
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I'm on Faslodex and eribulin. I've lost about half my hair which I think is from the eribulin, but my appetite is unfortunately back after loosing about 30 lbs on Afinitor. I feel hungry all the time. The good news is I don't have abdominal problems since i'm on this med combo and my tumor markers are down.
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Danish - did you have any "bleeding" problems when you were on Afinitor - I ended up with an intestinal bleed shortly after stopping the AA combo and it landed me up in emerg - lost a lot of blood but everything is fine now - I am just curious to see if anyone else has had problems.
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Susan, I too find that I crave salt for a few days after the injections. My hunch is that vigilant hydration pre-injection washes so much sodium out of us that our bodies beg for it to be replaced. That's my theory and I'm sticking to it unless someone comes up with something more plausible.
Now where are those Stacey's Naked Pita Chips with Sea Salt? Mmmm, great with hummus and guacamole.
Tina
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I have lost almost a stone since I started faslodex two months ago. It is not my taste buds, I can taste everything just fine - I just cannot eat anything. All my life I have struggled with weight, been on diets so often. Now for the first time in my life, I am losing weight on its own and I like it. I still eat healthy food, but just very little of it.
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Hi Tigre55, the fact that you are losing weight may (and would to me, believe me) sound like a great thing, but if you can't stop losing weight it will not be good.
You used the word "cannot" eat anything. Please tell me that when you get to your "goal" weight you'll be able to eat enough to keep you there?
My onc worried more about the five pounds I lost after surgery last year than the 15 pounds I've gained since. [I have started another campaign to lose them]
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Sandy, I had no bleeding problems while on Afinitor, but I did have abdominal pain. It's gone now but I don't know if because I'm off Afinitor or the meds I'm on now have shrunk my abdominal mets.
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HI LADIES !
I found out today that as soon as pre authorization happens I will be joining the fanny pack club..... I also have autoimmune hemolyptic anemia, and gave disease(stomach lining wrecked from a/a) . the anemia keeps me tired but looking forward to beginning treatment . do you use Ice or heat on the injection site ? does everyone get bone pain and hot flashes ?? thank you in advance for you tips
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Pajim thanks for your comments. I have also been having abdominal pains so today I saw my GP who prescribed omeprazole for ulcers, indigestion and heartburn. I am hoping this helps and I can eat again. It is really weird, I love food and after the first few bites I can't be bothered to eat any more.
Meanwhile I would not mind losing more weight - I need to lose 10 kg to be back to my original weight before the surgery and chemo. It would be great to fit all my clothes again. But I hear you. I will keep in mind that I must be able to stop losing the weight at some point..
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welcome Rosie. Last time I warmed the injections myself by putting them close to my body (a tip I picked up from one of the girls here on this site) and it helped a lot! There are really good tips at the start of this thread.
I have had many a hot flashes and also bone pain which I am sure are due to the Faslodex as I am not on anything else.
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Rose, welcome,
Yes make sure the injections are warmed up and that the nurse administers it slowly. After the injection, if you can, it's good to take a walk or massage the injection site to get the medication moving. I applied some moist heat at the site. I also applied some witch hazel to the site anticipating some itching. You can use hydrocortisone cream if the site becomes itching. Yes, I do get some hot flashes but so far no bone pain. Hope this helps.
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Rosie, I hoped you noticed some of these women have been on Faslodex for a number of years! I've just been on since June, so the idea of years really makes me happy. It seems rubbing the injection site, exercising it and adding heat. If your car has heated seats, that works well.
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I had my 3rd dose of Faslodex last Thursday and since then have been dizzy, had nausea and vomited, also had goosebumps (chills) while feeling like hot flash at the same time. I have felt "clammy" all day today also. The other 2 doses I didn't have any side effects. Are these normal ??
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welcome Chef, I am only 2 months along on Faslodex. I had no particular side effects after the first 2 shots, or second set of 2, but after the 3rd set I started having bone pain in my legs and some feelings of nausea. I do have multiple hot flashes some days and an occasional night sweat. Welcome to the group. Come back to read and share your thoughts. I usually check in everyday and find everyone's thoughts and ideas so comforting. Nan
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No more Faslodex for me. Only 4 shots total. Good luck to all the "fanny pack gals"! Moving to new threads.
Had scans on Fri., CT, MRI and PET. Saw Doc today. He said: good news first... So I knew this wasn't going to be good. Good news is no edema in brain and radiation appears to have worked. Bad news: lots of progression everywhere else. Much more on bones, now in liver too, on abdominal wall and more in lungs. Doc says to start chemo in the form of taxol and xeloda, I think, I'm a little overwhelmed right now. Said hair will fall out. I just cut it short last Fri for a change. So much for that. I'm honestly not feeling very hopeful right now. Since I was dx it has only progressed. I have more pain, so they're sending me to pain specialist.
Bah humbug. :'-(
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Skylotus, I'm so sorry Faslodex didn't work for you. Bah humbug indeed!
I'm hoping the next drugs knock those little buggers out, and wishing you pain free days, months and years.
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sky,
I am so sorry to hear that Faslodex was unable to help you quickly enough. Enjoy a few weeks of your new cut.... I bet you look wonderful. I will watch for you on the boards, and support you in any way that I can.
*susan*
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Skylotus, I am so sorry to learn this news. I am distressed that Faslodex failed you and hope your new treatment will ride to the rescue and rapidly smack those mets into oblivion,
Tina
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Hello everyone. I am working on an art project called "The People Who Are Keeping Me Alive" It is a portrait series of the doctors, nurses, technicians, chemo ward staff, surgeons, my friends and of course my mother.. The exhibition is this autumn at the Imperial college London. Please have a look (and like) the Facebook page I have made about the process Facebook.com\rina.alive - and of course if possible come to see the portrait series.
It is really exiting to actually work on something creative while undergoing treatment with the very people who are making such a big difference in my life. I am sure most of you have also some wonderful people who are making a difference.
X Rina
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For those of you on Faslodex for a while now, did you guys see the tumors shrinking or did they just stay stable? I just had an MRI of the skull with nothing in my head but a brain, and he did a CT of the chest, abdomen and pelvis, and that scan showed no change in the tumors.
I was under the impression that if Faslodex was working optimally, there would be shrinkage and then we would start the Xgeva to strengthen my bones.
Still no Pet scan, so still don't know if the 11 tumors we've found are all of them, and since we don't have the full body PET, we don't know that there isn't progression, we just know that the ones we do know about haven't grown or spread.
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Terri-C, the problematic nodules in my lungs became gradually smaller during Faslodex treatment, other dubious "ground glass" areas apparently stayed the same size. All registered as metabolically inactive in less than two years, I'm happy to say. I've now been on Faslodex for three years.
Tina
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Thanks Tina, that makes me feel SO much better
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Tina, I am also very inspired by your response to faslodex. This is the drug that I am hoping to have if my response to Abraxane is goo. I find out after the 15th of October. BTW, did you have your lung mets in the lung or in the plerual lining?
Thanks.
Brenda
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Brenda, the mets are in both lungs, not the pleural lining. I wish I could write "were." Although diminished in size thanks to treatment, technically they still are there and visible on a scan. However, they are not active and that's what counts.
I am delighted my response to Faslodex can be a source of inspiration!
Tina
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Mine were in the pleural lining [one of the spots] and no longer show on the scans at all. I have done 56 months of Faslodex.
*susan*
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Rosie06ct....NO ice after the injection since it will keep the serum from spreading like it should.
I have had hot flashes for 15 years, which are worse after 12 years of chemo.
And I have been on Faslodex for 3 years, now with Kadcyla for mets to the nodes behind my sternum. So far, the Kadcyla seems to be working-will get another PET scan in Nov.
The Faslodex has changed my taste buds in that I can't stand artificial flavorings...flavored coffees, yogurt ice cream, etc.
It all tastes like paint to me. Most other foods are okay though, and always fighting my weight, since I could really stand to lose several pounds....or more.
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