Faslodex Girls Thread
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Tina I used nioxin on the advice of the Onc nurses in my first dance with BC. My hair came in brilliantly, but without doing half and half I don’t know how well it worked. Suffice to say I have a box in my bathroom which will def be used when I need it again!
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There's no difference between what I was charged for the original Faslodex and the generic. I will investigate nioxin.
Thanks.
Tina
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I'll look into nioxin too, thanks.
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Apparently Nioxin works by thickening the existing hair. Obviously, it's pointless to use it unless one has stopped chemo, as the treatment will continue to cause hair loss. Nioxin can also cause scalp irritation.
Tina
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Tina - I wonder if the scalp irritation you mention re nioxin is actually the reddening of the scalp, which is part of the process...it stimulates blood flow. A wee patch test would be wise. You’re right in that the hair does need to be growing in order to work.
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I personally wouldn't use Nioxin based on the ingredients. I couldn't find them on the Nioxin site so I went somewhere else to find them. This is just for the shampoo.
Ingredients: Water, Phenoxyethanol, Polysorbate 80, Polysorbate 60, Acetamide MEA, Triethanolamine, Citric Acid, PEG-23M, Methylparaben, Hydrolyzed Keratin, Propylene Glycol, Propylparaben, Methyl Nicotinate, Fragrance, Mentha Piperita (Peppermint) Oil, Menthol, Mentha Arvensis Leaf Oil, Methylisothiazolinone, Camellia Sinensis Leaf Extract, Cystine Bis-PG-Propyl Silanetriol, Lecithin, Urtica Dioica (Nettle) Extract, Serenoa Serrulata Fruit Extract, Humulus Lupulus (Hops) Extract, Citrus Paradisi (Grapefruit) Peel Extract, Saccharomyces/Magnesium Ferment, Biotin/Folic Acid/Cyanocobalamin/Niacinamide/Pantothenic Acid/Pyridoxine/Riboflavin/Thiamine/Yeast Polypeptides, Yeast Extract, Saccharomyces/Iron Ferment, Saccharomyces/Copper Ferment, Saccharomyces/Silicon Ferment, Saccharomyces/Zinc Ferment.
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Yip - that shocker of a list put me off too... by my nurses reckoned worth a try. Each to their own on this one.
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JACK5IE, thanks for finding list of ingredients. I was put off when their own site didn't list them!
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One of the ingredients in Nioxin is Biotin. Sounds like that is the effective ingredient. Will check that out on the supplements forum.
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You're welcome!
My MO told me no supplements with the exception of Vitamin D/Calcium. As far as shampoos and other topical products, I'm trying to use as many natural ingredients as possible. So even though my hair has thinned considerably (it never really grew back great after TAC chemo in 2009) I'm just using wigs. I had a really nice full head of hair prior to all this, so it does pain me that I have hardly any now. Sometimes I get really sad about it. But then I try to think that it's just hair.
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Hair is a thing even if it isn’t a thing! I didn’t really care about having no hair, knowing it would grow back after treatment. Now that the treatment is never ending, having no hair is just adding insult to injury. My niece (18) has exactly the same hair as me - thick curly and with an auburn hint- and she laughs when I tell her ‘ you have my hair... gimme it back!’
In fact she grew it down to her bum, got it chopped and donated it to make wigs, bless her cotton socks!
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Karen that's so nice of your niece!
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Hi All, just to report after a chat with my MO who asked me to 'hold my nerve' re the time it was taking for Faslodex to kick in and the pain I've had because of pleural effusion for 3 weeks and more now....I can report 2 full days with no pain meds! Still breathless and wonder if this is just the drug kicking it back and it will build up again before the next jabs. But still will take no pain any day! Cross posted to Mel’ living room thread sorry.. but I'm happy!
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Ok, this goes a bit beyond the Faslodex but please hear me out. Briefly, in 2013 I had double mastectomy with tubular, dcis and ILC on both sides. Oncotype 2, 5 years of arimidex. Test at end of 5 years again showed super low change of recurrence. Last May 2020 I found a lump and it is ILC. Have been on Ibrance and Faslodex since then. No mets.
I just switched back to my original Onc dr that I started seeing when I moved 4 years ago to Fla. This June I moved to one closer to my house, same Fla Cancery Spec. system.
The closer dr said, no radiation, leave lump in to see if meds work and possibly remove later.
This Dr says take it out and have some rads, then it is cured. Some hormone suppressant later, no Ibrance.
How could the 2 opinions be so different? One I guess prescribed as deterrant, while the other is a 'cure'. Really threw me off. I could continue the Faslodex as the suppressor, he will decide later. MRI, then consult with surgeon and rads onco coming up.
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Hi Aviva,
I’m confused. Your diagnosis/treatment summary indicates you are stage IV. Is this not correct?
I don’t think you will get the answer you are looking for on this thread. There is another called “not diagnosed stage IV but worried” (I think) where you might get more people to weigh in on your concern.
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Aviva, I read another post of yours where you say the recent tumor was in the chest wall (not the breast), so I guess that is why it is called stage iv. The conventional wisdom is no surgery for stage iv, control is possible but not cure. But if that is the only cancer recurrence, then you could be treated as oligometastatic (very limited spread) and go for a cure with surgery and radiation followed by systemic therapy such as Faslodex. Look up Oligometastatic and this new way of looking at it. If you have not already, can you get an opinion at a top cancer center?
The top-level (NCCN) cancer centers in Florida are Mayo Clinic in Jacksonville and Moffitt in Tampa. A good second choice (NCI) would be University of Miami Miller School of Medicine Cancer Center. If these are too far for treatment, an option is to use them for getting the diagnosis completed and a treatment plan to implement locally.
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Question for you faslodex gals --
I've been on faslodex since July 2019. It has really worked out much better for me than letrozole, which I had been on for 13 years. On letrozole, I had tendinitis in both ankles, and my knees had some weird things going on -- not all of this at once, but over time. (My MO told me that tendinitis was a known side effect of letrozole.) With faslodex, I really haven't had any of that yet.
However, today I noticed that my left knee was a bit weak, and it felt like it might give out. This is exactly the same thing I had happen to me with letrozole. I don't think I've seen anyone here say that they had issues like this -- just joint pains. Has anyone experienced this "weakness" and pain in their knees or ankles while on faslodex? If so, what did you do?
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Hmmm... I suspect it may be a case of not connecting the dots if there is a link. It’s odd that you mention this now as I have been having trouble with my feet and ankles. Couldn’t figure out why...
I’ve been on Faslodex for just under three years and this trouble is recent, coinciding with a lot of achiness. So not sure.
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Sadiesservant,
My MO never told me about any of this as a side effect until I told her I had gone to an orthopedic doc to find out what was going on. I also did PT for a bit. Then it simply vanished. But when I felt this today, I thought -- oh, no, not again.
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Ladies,
I've been on Faslodex and Herceptin since May 2020 and have been doing well.
The last month I seem to be experiencing increased joint pain and hot flashes (a bit similar to when I was on Letrozole).
Wondering if accummulation of Faslodex (+6 months) could be the root cause ?
And if so, whether these side effects will ease off ?
Take care,
Meja
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I had pain and stiffness on letrozole, but not on faslodex (other than sore buns and that one odd week of lower back pain recently). I do get foot cramps in bed. I think it is the faslodex — tamoxifen gave me calf cramps — but it could be fluctuations in electrolytes caused by diarrhea.
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ShetlandPony,
Sorry to hear you are having cramps and diarrhoea, - good idea to check your electrolytes (magnesium, potassium..).Meja
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I think that I started Faslodex in January of this year. I started having lower back pain that got progressively worse and then by April had sciatica with it as well. I am still dealing with this issue. I did have a MRI back in April and there are definitely things going on in my spine (degenerative, a cyst, a bulging disk) that could be the cause but I was not someone who had any problems with back pain and then all of a sudden it was a problem. I have wondered if one of my cancer treatment drugs is responsible. I see that one of the side effects to Faslodex is back pain but I wish it would expound a little more on what type of back pain...heightens degenerative changes, causes sciatica, etc.? I have been trying to manage this issue ever since. I have been getting my Faslodex shots in the hips instead of above the buttocks in case something was irritating my sciatic nerve.
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Aches, pains, neuropathy in all joints and feet. It's either the Faslodex, Xgeva or Ibrance or all three together. Plus the HBP or cholesterol med which I didn't have prior to breast cancer.
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Cowgal, sounds like there is some kind of accumulation going on, as the body is deprived of oestrogen receptors the body aches increase, such as lower back pain.
I also now get the shots in the hip which has eliminated any local pain.
Jack5ie, I agree it is difficult to know which treatment or combination is the culprit. I also get Xgeva (since May 2018), but not sure I have any side effects form that product.
Anyway, I got into a hot tub last evening (usually just shower), and it really did help with the body aches in my hip and back, and use a heating pad a few times during the day, - just have to hope that the aches get better, before it possibly starts all over with the next shot. But it is all biology, and each cycle and set of side effects seem to differ.
Happy holidays,
Meja
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Karen, glad to hear two days of no pain. Hope no pain is continuing.
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Hello ladies!
I'm on my 2nd round of Kisqali and Faslodex currently. My last Faslodex was 1/4 and at the time seemed to be the least painful.
Where do you experience pain and how many days does it last? I have had some persistent pain around my tailbone area. So it's not directly at the injection site, but in the general area. Is this normal? Its becoming pretty bothersome.
Thx
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Hello All, Just been told my cancer is progressing, nodes in pleura, a spot on my spine and an enlarged lymph node in my chestwhjch may or may not be the cancer. Main issue is a large pleural effusion- my right lung is full and I need to go into hospital on Monday to have this drained over a couple of days. Been so breathless it's scary, but now we know why!
Then it's change treatment to Xeloda as the Faslodex is clearly not working. So I’m signing off from this thread for now and wish everyone well on their continuing Faslodex journey.
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Karen...I'm so sorry to hear this. Best of luck to you on your new treatment. You're in my thoughts and prayers.
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Karen,
I’m so sorry to hear about the progression. I completely understand what you are going through with the SOB as I was diagnosed as having MBC due to a large pleural effusion in my right lung. It got to the point that I could barely walk 10 feet without gasping. Made walking the dog a bit tricky! I’m sure the draining will make a huge difference. You might need to consider a PleurX Catheter if the fluid keeps returning as it did in my case.
Wishing you all the best with Madame X. Make sure you keep you hands and feet moisturized!
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