Faslodex Girls Thread
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Yes, I didn't see where Tina had posted the nursing article on IM injections, so I re-found it some time later. It would be great to include it at the top along with the tips. Bluebird, don't be shy about finding a really experienced faslodex nurse to talk with if you go back on faslodex. There is someone else here on BCO who is on Xeloda, Faslodex, and I think one other drug. I will figure out who and ask her to reach out to you if you like. Deanna, don't you think X and Fas would be do-able, since Fas is fairly easy?
Dianarose, I'm glad to hear your counts are up and your TMs are down. I think you will find the post-injection pain eases now that you are past the loading doses that come two weeks apart.
Cling and 50sgirl, happy about your good response to treatment!
My PET scan was overall good, with less uptake, but some lesions larger -- hopefully just swelling from necrosis before they shrink. Really really hope to see TMs down next week. Still feeling good on Faslodex and Afinitor.
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Cling sending hugs. Hope the biopsy is negative.
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Hi everyone, I'm popping in to ask about joint pain. Mine has been so bad lately, that I'm thinking of quitting Faslodex, even though it appears to be working so far. I feel like I have aged twenty years this year. I'm taking it in combination with Ibrance, but I it's been almost two months since my last Ibrance cycle (low white blood cell counts). So it has to be the Faslodex causing the joint stiffness and weakness, doesn't it?
I hate to mess with a good thing, because my last scan - a month ago - was so good (only the primary tumor still showing up - all the mets have gone dark). But I need to use my ankles and wrists!
Anyone have any suggestions? I'm already going to an acupuncturist, and that helps.
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Tina, Shetland, maybe it's time to start a new thread? I wouldn't be offended. . .
That way you can put all the new info at the top.
My blood work is not hanging in on A/A/Ibrance. I keep failing the neutrophil count. Sigh. I feel fine. Finally it's the third cycle so I don't have to go in to the cancer center for another month. Woo!
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Bluebird, I'm on Faslodex and Xeloda (2000 mg 7/7 schedule), plus Afinitor. My insurance company approved it and I feel pretty decent on the combo. The faslodex doesn't give me a lot of side effects, it's really the Xeloda that makes me tired and a bit woozy sometimes. But at the moment it's working and my TMs are on the decline.
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Oh dear, I missed that post from Cling about something on the scan. I sure hope that "something" is nothing, Cling.
NineTwelve, I see that you started Zoladex at the same time as Faslodex. I will hazard a guess that the instant menopause is more responsible for the joint pain than Faslodex is. Thanks to Zoladex, in terms of your estrogen supply it might be like you have aged those twenty years, or maybe ten. Can you get help from a palliative care specialist? Move, move, move. Eat omega 3 foods like salmon and sardines. Make sure your vitamin D is adequate. That's all I got.
Hello, melmcbee. In case I didn't say it before, nice to meet you!
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Hi Shetland. Thankful I found yall
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Ladies, ShetlandPony kindly reminded me that I can edit the post at the top of the thread (idiot me). I've added a link to Tina's article. Is there anything else I should add to the top?
When I originally created this thread, it was so that the women starting Faslodex could get the info they needed right away rather than having to read through four years worth of chatter. So if there's anything else I should put up there, PM me or I'll come back and collect it here.
I'm heading out to Spain for a conference so if I don't respond for a week I'm not ignoring anyone, promise.
Pam
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Pam,
You are the best! Thank you.
Off the top of my head I can't think of anything to add except maybe to append "and beyond" after "2014." If something else occurs to me, I will let you know.
Hope you have some respite from the conference so you can enjoy wherever you're going in Spain. We loved our trip there two years ago. Enjoy!
Tina
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So I got up in the night to pee and no urine in the bag from the right kidney. Got up a few minutes ago and still nothing. I can see I am going to spend my day at the ER ☹️
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Thinking of you Dianarose.
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Hi NineTwelve...sorry to hear you are having joint pain. I too am experiencing increasingly more pain in my elbows, wrists and ankles. I started Faslodex 3 months ago. I take Advil when it really starts to bother me which is usually when I just get up in the morning or if I ve been sitting watching the news etc. But I don t want to be always popping a pill and it doesn't t always work.
My onc dr said when on Faslodex the key is to keep moving. I do exercise and walk which really helps. Guess I m soon going to add sleep walking....lol.. to my exercise routine. She also suggested having a couple of ice packs ready to put on my joints when pain starts and that has helped.
My Onc said the positive results showing up in her advanced cancer patients on F are outstanding, either no progression or stability for months and years.
I just had the results of my CT scan and bone scan and the RO said there is evidence of new bone growth after just 3 months on the drug. He said this means the drug is working. So I m going to try to stick with it.
But I m also thinking of trying acupuncture as an option to relieve joint pain too.
Just wondering if anyone has had success with it in reducing pain or can give any tips/tricks.
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MCK, I haven't had a lot of joint pain so far, except my TMJ pain keeps recurring and my feet get achy. I do find that acupuncture helps a lot. Everytime I need TMJ relief the acupuncture does the trick.
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I started using raw hemp oil and it really helped joint pain. We also do Bowen therapy.
Do most stay on Femara when using a chemo such as Xeloda or others?
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hi Girlwithacurl...I m laughing here as I just love your name. Thanks so much ! I will def make an acupuncturist appt this week and will let you kno how it goes.
Regarding your TMJ issues, during the 5 months through my diagnosis last Fall, before treatment ( I was stage 4 out of the gate and honestly thought I was going to die that week based on what the Onc was telling me), I had a lot of TMJ issues at night. By morning I could hardly eat.
I went to a oncology dentist ( who knew this was a specialty) and she figured out I was prob grinding my teeth at night bc of all the anxiety and stress. She had me start wearing a type of retainer at night and the TMJ prob disappeared over a couple of weeks.
I m also now on a bone stabilizer drug in addition to Faslodex, which can cause TMJ issues, although rare, so I continue to wear the night retainer. This dentist has started me on teeth cleaning every 3 months as a preventive TMJ measure as well
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hi Bluebird. I love your name too! So creative you girls are. If I were to choose a new name now it would be "Snarly", as my husband just told me affectionally that when I get joint pain, I get a bit snarly....lol
Just wondering what is Bowen therapy, who does it and how does it work in relieving pai
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DH took off the dressing that the visiting nurse just did and there were two kinks in the tube. Glad no ER trip tod
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Dianarose, so happy to hear you don't have to go to the ER!
MCK, thanks! Are you on xgeva? I'm sure I'm clenching my jaw from tension. I got one of those mouthguards years ago, but it was so uncomfortable I never wore it. Now I'm sure it won't fit. The TMJ pain is annoying but as long as it's not jaw mets or necrosis, I can live with it!
Bluebird, I'm curious about Bowen Therapy too. Do you ingest the hemp oil or use it topically?
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girlwithaCurl ...yes I m on xgeva! Once a month as an injection. My oncologist said it would also stop cancer cells from spreading to other bones and stabilize them. I do have hot flashes as a side effect. I also take calcium and Vit D 3 as well as Magnesium. The Calcium supple. was causing a little constipation so my daughter who s a pharmacist, found a product at Cosco, a Kirkland brand, that has the correct amount of calcium with mag in it. I started taking Tumeric too which is good for digestion but she said it interferes with Faslodex. I ve been drinking 5 cups of green steeped tea a day and that too has helped a little with joint pain. My daughter said it has great anti inflammatory benefits in it.
I also now take a probiotic twice a day to keep my gut healthy. My Onc said it s fine to take. So now my digestion issues are gone.
Re TMJ, You may have to get refitted for a new mouth guard as your old one may not fit anymore but these days with new technology, the material they use to make them is super light weight so is more comfortable to wear. My Oncology dentist did a lot of filing on it so it s a perfect fit in my mouth.
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MCK, I take those supplements too. The pharmacist at my oncology center didn't have a problem with me taking turmeric with Fas., though I couldn't take it when I was on Ibrance. I bet the turmeric helps with the joints too. The magnesium helps with the constipation. I also drink a lot of green tea, though sometimes I try to get it all in with a matcha drink. I'm on xgeva too--in fact I have to go in tomorrow for xgeva, faslodex AND lupron. My tushy is going to hurt! How great that your daughter is a pharmacist. You have an expert to consult with all the time!
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Thanks to those who wrote about joint pain. I know my profile is confusing, but the Zoladex has been with me since the beginning, back in September of 2014. It's the Faslodex that's the most recent drug change, and it's just in the last two months that my wrists and ankles are so weak and inflexible. Maybe it's the last straw for my poor joints.
I picked up some glucosamine from the health food store, maybe it will help. I have noticed that I don't get in as much exercise as I used to. The heat has been out of order in my building so I've been huddling over a heating pad, in twelve layers of socks and sweaters. My landlord should have it up and running - just in time for summer.
I'm seeing my MO later this week and will ask his advice.
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girlwithacurl How horrible! 4 injections at once! You poor thing. I started to take an Advil before my injections last month and it helped with the pain. I also warmed up two gel packs in a pot of hot water before I left for my app, wrapped them in a towel and put them in a little cooler. I placed these under my tush (each side where the injections were given) ( in my underwear under my jeans) before I drove home after the injections. To my surprise these really helped with the stiffness and soreness and helped F get absorbed. I don t have a car seat warmer. The nurse said the drug Fas. is as thick as molasses and takes time to be absorbed so not to use ice packs. This was my third month on F with almost nil sideeffects the day if injection
Yes it s lovely having a daughter who s a pharmacist. She s more like a mother hen reminding me of one thing or another re: my drugs. The team of pharmacists at her work call me too so I get the same info 5 times...lol... I don t have the heart to tell each of them that my daughter already filled me in. Lol. Her twin sister, a registered psychologist, calls to see how my emotional state is. It s like the roles have reversed. It makes me smile. Funny how the little things mean so much.
I ll def recheck out turmeric again with my Onc too. It was the supplement and amount in each capsule that she said is the problem.
NineTwelve... oh my! Feeling miserable and having to stay in a cold place must be terrible. I do hope your building s heat is fixed!! Keep bugging him. I do hope your joint pain reduces too. It s hard to exercise if you re feeling cold. My thoughts are with you today. I live in Eastern Canada so understand about cold winters.
Have a wonderful day girls 💕
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Thanks, MCK. I bet you also understand about long cold Springs and Autumns! My apartment has been at a steady 62 degrees for a month. I wonder if that has anything to do with my joints hurting?
I have been adding turmeric to smoothies and soups, about a quarter to a half teaspoon. It hasn't ruined the flavor of anything yet.
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NineTwelve. I bet the cold temp is affecting your pain. Try getting a couple of mini hot water bottles with a towel over your ankles or knees with your feet up.
I saw a show here in Canada on great foods to eat when fighting disease yesterday. They said it s imp to add ground pepper which will bring out the antioxidant properties. They said it s also great "brain" food and also good for digestion. I then looked up a little research on it for cancer and it said studies have def shown some benefits to including it in one s diet.
So I m def chatting to my Onc about how much I have have. That s a great idea to add the powder to your smoothies.I now add it to just green tea but very small amt, like yourself
We may not be able to control our cancer but making small changes in my lifestyle like diet and exercise gives me some feeling of control. The only thing I dearly miss is a glass of wine. When I measured out what 4 oz is, I laughed and said to my husband " I may as well not have it" lol
Stay warm my friend ! I m thinking of you
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Thanks, Max (can I call you that?)
I highly recommend the book Anticancer. It has great info about what to eat. It turns out that pepper, garlic and turmeric work even better together, so why not add some flavor to your food? Even if I'm just opening a can of soup, I will usually throw those three things on top.
I have cut back on my beer consumption, as my MO (a Mormon) suggested I should not be drinking any alcohol. Not ready to give it up altogether though. I do use medical marijuana in the evenings, to help take away tension, pain, and insomnia. Sometimes just to relax.
One weird little change I made recently was to get rid of half my furniture. Now I have room to walk around or do yoga, and the open space feels liberated. My goal is to keep relaxing until that is just my normal state! (I have a ways to go.)
I really beleive we can make all the diet and exercise changes in the world, but it won't help us if we are miserable. Being contented or joyful or just serene can do so much for one's health, I think.
: ) Eve
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Hi ladies,
Just popping in to ask if anyone has problems with dizziness and, if so, what are you taking to deal with it? I feel that it's either faslodex or femara...
Hugs x
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Aoibheann, I usually treat dizziness with a glass of water and/or a snack, since dehydration and low blood sugar are common causes of dizziness. (Sometimes I have a symptom that is not related to either my cancer or my medications.)
Whatever the cause, I hope your dizziness goes away soon.
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Four shots were too much! Usually I do fine with the Fas shots but so grumpy yesterday and so sore today. I suspect the lupron is the grumpy culprit. I'll definitely put some heat on those injection sites! Blech.
Ninetwelve, I have read Anticancer too. It really informed how I started approaching my food and mind-body work. We are going to our school gala on Friday and I'm really going to miss having a drink (or two).
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Siobhan I've had the dizzy thing. Did a brain scan. Good. RO says drink extra water breakfast, lunch and dinner. Sometimes I think my poor sleep habits catch up to me. It's also allergy season here.
I've had my first loading shot. Get the second dose next week. I agree four shots is too much. I had three last time including the xgeva. It's bad when you can't lay on your belly or back. I found a warm tea bag worked great on the xgeva. Just used hot packs on hips. I took three days to feel better.
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girlwithacurl. Here s hoping that the pain in your 4 injection sites is a little less sore tomorrow for you. And have a drink when you go out FRi night as you des
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